It’s a reality that medical emergencies and end-of-life situations can arise unexpectedly, leaving you or your loved ones facing critical healthcare decisions. In these moments, the ability to clearly communicate your wishes regarding medical treatment becomes paramount. While we often assume our families intuitively know our preferences, studies reveal a significant gap in understanding, with nearly one in three end-of-life decisions being incorrectly guessed by loved ones.
Proactive planning is key to ensuring your healthcare wishes are honored. Research consistently demonstrates that individuals who engage in advance care planning and clearly communicate their preferences are significantly more likely to receive the care they desire. Furthermore, this proactive approach can provide immense emotional support to your family, easing their grief and lessening feelings of burden, guilt, and depression during challenging times.
What are Advance Care Directives?
Advance Care Directives are legal documents that empower you to make decisions about your future medical care, even if you become unable to communicate those decisions yourself. They are a cornerstone of advance care planning, a process that involves thoughtful reflection and communication about your values and healthcare wishes. Advance care planning is fundamentally about having meaningful conversations with your loved ones regarding your healthcare preferences should you face serious illness or incapacitation. While these conversations are crucial, formalizing your wishes in writing through advance directives provides a clear and legally recognized framework for your care.
Alt text: Advance Care Planning Guide cover, featuring title “Advance Care Planning: A Conversation Guide” from the National Institute on Aging, emphasizing proactive healthcare discussions.
Advance Directives vs. Advance Care Planning: Understanding the Difference
It’s important to distinguish between advance directives and advance care planning. Advance care planning is the broader process of considering your values, discussing your wishes with loved ones and healthcare providers, and making plans for future care. Advance directives are the written legal documents that result from this planning process. Think of advance care planning as the journey, and advance directives as the documented roadmap of your healthcare wishes.
Types of Advance Care Directives: Living Wills and Durable Power of Attorney
Within the realm of advance directives, two primary documents stand out: the living will and the durable power of attorney for health care. These documents serve distinct but complementary purposes in ensuring your healthcare wishes are respected.
Living Will: Expressing Your Treatment Preferences
A living will is a legal document that outlines your specific preferences for medical treatment in end-of-life situations or if you become permanently unconscious. It allows you to accept or refuse medical care, including life-sustaining treatment, such as mechanical ventilation, artificial nutrition and hydration, and resuscitation. A living will comes into effect only when you are unable to make your own medical decisions and are in a condition specified by state law, often a terminal condition or permanent unconsciousness.
Durable Power of Attorney for Health Care: Appointing Your Healthcare Proxy
A durable power of attorney for health care, also known as a healthcare proxy or healthcare agent, is a legal document where you name a person you trust to make medical decisions on your behalf if you become unable to make them yourself. This person, your healthcare proxy, will make decisions in accordance with your wishes, values, and best interests. Unlike a living will, which focuses on specific treatments, a durable power of attorney empowers your chosen representative to make a wider range of healthcare decisions as needed. It’s crucial to have open and honest conversations with your healthcare proxy about your values and preferences so they are well-equipped to advocate for you.
Who Needs an Advance Care Directive? It’s Not Just for the Elderly
A common misconception is that advance care planning and advance directives are only relevant for older adults or those with pre-existing illnesses. However, the reality is that unexpected medical crises can affect anyone at any age. Accidents, sudden illnesses, or unforeseen medical complications can render anyone temporarily or permanently unable to communicate their healthcare wishes.
Therefore, advance care directives are essential for all adults, regardless of age or current health status. Creating these documents is an act of responsible planning, ensuring that your voice is heard and your healthcare preferences are respected, no matter what the future holds. It provides peace of mind for you and your loved ones, knowing that a plan is in place.
What Happens If You Don’t Have an Advance Directive? The Default Decision-Makers
If you haven’t established an advance directive and become unable to make your own medical decisions, the authority to make those decisions defaults to state law. Each state has laws that determine the order of priority for surrogate decision-makers. Typically, this hierarchy starts with your spouse, followed by your parents (if available), and then your adult children.
However, relying solely on state law can lead to unintended consequences. For instance, if you are unmarried and have a partner, but haven’t legally designated them as your healthcare proxy, they may be excluded from the decision-making process, even if they are the person who knows you best and is most attuned to your wishes. Similarly, family dynamics can be complex, and relying on default surrogates may not always align with your preferences.
In situations where there are no family members available, some states may allow a close friend who is familiar with your values to act as a surrogate. In other cases, a physician might be assigned to represent your best interests. To understand the specific laws in your state, it’s advisable to contact your state legal aid office or state bar association.
Will an Advance Directive Guarantee Your Wishes are Followed? Understanding Limitations
While advance directives are legally recognized documents, it’s important to understand that they are not legally binding in the strictest sense. This means that healthcare providers and your healthcare proxy are ethically and professionally obligated to make every reasonable effort to honor your advance directives, but there may be circumstances where strict adherence is not possible.
Complex medical situations can arise where the exact course of action you would have wanted is unclear, even with a well-written advance directive. This underscores the critical importance of ongoing conversations with your loved ones and healthcare proxy. Discussing your values, treatment preferences, and general philosophy regarding healthcare can provide invaluable context that helps your proxy navigate unforeseen situations and make decisions that best align with your overall wishes.
Furthermore, there are limited instances where a healthcare provider might refuse to follow your advance directives. This could occur if a particular directive conflicts with:
- The healthcare provider’s conscience: In rare cases, a provider’s personal moral or ethical beliefs may conflict with a specific directive.
- The healthcare institution’s policy: Hospitals and healthcare facilities may have policies that limit certain treatments or procedures.
- Accepted healthcare standards: If a directive requests treatment that is considered medically inappropriate or outside the bounds of accepted medical practice, it may not be followed.
In such situations, the healthcare provider is legally and ethically required to immediately inform your healthcare proxy of the conflict and explore options such as transferring your care to another provider who is willing to honor your wishes.
Beyond Living Wills and Power of Attorney: Other Advance Care Planning Documents
In addition to living wills and durable powers of attorney for healthcare, several other documents can play a vital role in comprehensive advance care planning, addressing specific medical situations or preferences.
Do Not Resuscitate (DNR) Order
A Do Not Resuscitate (DNR) order is a medical order that becomes part of your medical chart, informing medical staff in a hospital or nursing facility that you do not wish to receive cardiopulmonary resuscitation (CPR) or other life-support measures if your heart stops beating or you stop breathing. DNR orders are sometimes referred to as “Do Not Attempt Resuscitation” (DNAR) orders or “Allow Natural Death” (AND) orders. While a living will may express your wishes regarding CPR, a DNR order provides clear and immediate direction to medical personnel in a hospital setting. Having a DNR order prominently displayed, such as next to your hospital bed, can prevent confusion and ensure your wishes are respected in an emergency. Without a DNR order, medical staff are obligated to make every effort to restore your breathing and heartbeat.
Do Not Intubate (DNI) Order
Similar to a DNR order, a Do Not Intubate (DNI) order informs medical staff in a hospital or nursing facility that you do not want to be placed on a ventilator (intubated) to assist with breathing. This order specifies your wish to forgo mechanical ventilation.
Do Not Hospitalize (DNH) Order
A Do Not Hospitalize (DNH) order is relevant for individuals in long-term care facilities, such as nursing homes. A DNH order indicates to care providers that you prefer not to be transferred to a hospital for treatment at the end of life. This reflects a preference for receiving care and comfort within the familiar setting of the long-term care facility.
Out-of-Hospital DNR Order
An Out-of-Hospital DNR order is specifically designed to alert emergency medical personnel, such as paramedics, to your wishes regarding resuscitation efforts in situations outside of a hospital setting. This order ensures that your DNR wishes are respected even before reaching a medical facility.
Physician Orders for Life-Sustaining Treatment (POLST) and Medical Orders for Life-Sustaining Treatment (MOLST) Forms
Physician Orders for Life-Sustaining Treatment (POLST) and Medical Orders for Life-Sustaining Treatment (MOLST) forms are standardized medical orders designed to provide actionable guidance to healthcare professionals in emergency situations. These forms serve as medical orders in addition to your advance directive, translating your general wishes into specific medical directives. POLST/MOLST forms are typically created for individuals who are nearing the end of life or have serious illnesses and have a clear understanding of the specific medical decisions that may need to be made on their behalf. These forms may also be known as portable medical orders or physician orders for scope of treatment (POST). The availability and specific names of these forms vary by state, so it’s best to check with your state department of health to see if they are available in your location.
Alt text: Example of a POLST (Physician Orders for Life-Sustaining Treatment) form, illustrating the structured format for documenting medical preferences for end-of-life care.
Organ, Tissue, and Brain Donation
Beyond directives related to life-sustaining treatment, you may also want to document your wishes regarding organ and tissue donation and brain donation. These decisions are separate from advance directives but are important aspects of end-of-life planning for those who wish to make these generous contributions.
Palliative Care and Hospice Care
Learning about care options such as palliative care and hospice care is also an integral part of advance care planning. Understanding these options allows you to make informed decisions about the type of care you would prefer to receive if facing a serious illness. Palliative care focuses on relieving pain and improving quality of life for individuals with serious illnesses, while hospice care provides comprehensive comfort care for those nearing the end of life.
How to Get Started with Advance Care Planning: A Step-by-Step Guide
Initiating advance care planning may seem daunting, but breaking it down into manageable steps can make the process less overwhelming. Here’s a step-by-step guide to help you get started:
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Reflect on Your Values and Wishes: Take time for introspection and consider what truly matters to you in terms of quality of life, values, and priorities for medical care, particularly at the end of life. Consider questions like: What makes life meaningful to you? What are your fears about serious illness or death? What kind of medical treatments are acceptable to you, and which ones are not? This self-reflection forms the foundation for your advance care plan.
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Discuss Advance Directives with Your Doctor: Schedule a conversation with your physician to discuss advance care planning. Medicare covers advance care planning as part of your annual wellness visit, and many private health insurance plans also offer coverage. Your doctor can provide valuable insights into your current health status, discuss potential future health scenarios, and explain the types of medical decisions you might face. Don’t hesitate to ask specific questions about treatments, procedures, and end-of-life care options.
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Choose Your Healthcare Proxy: Carefully select a person you trust implicitly to serve as your healthcare proxy. This individual will be responsible for making medical decisions on your behalf if you become unable to do so. Choose someone who understands your values, is willing to advocate for your wishes, and can handle the emotional challenges of this role. This could be a family member, a close friend, or even your lawyer.
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Communicate with Your Healthcare Proxy and Loved Ones: Once you’ve chosen your healthcare proxy, have open and honest conversations with them and other loved ones about your values and healthcare preferences. Share your reflections from step one, discuss your living will and durable power of attorney, and answer any questions they may have. If discussing specific treatments feels overwhelming initially, start by talking about your general preferences, such as your desire for comfort, independence, or quality of life. You can also use tools like letters or videos to help facilitate these conversations.
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Complete Your Advance Directive Forms: Formalize your wishes by completing the necessary advance directive forms. This typically involves creating a living will to document your treatment preferences and a durable power of attorney for healthcare to officially designate your healthcare proxy. Ensure you use forms that are legally valid in your state.
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Share and Store Your Advance Directives: After completing your advance directives, make copies and store the originals in a safe and accessible place. Provide copies to your healthcare proxy, your doctors, and your lawyer. Consider utilizing state registries that electronically store advance directives for quick access by healthcare providers and your proxy in emergencies.
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Regularly Review and Update Your Plan: Advance care planning is not a one-time event. Your values, preferences, and life circumstances may evolve over time. It’s essential to review your advance directives at least annually and update them whenever significant life events occur, such as changes in your health, marital status, or relocation to a different state. If you make updates, properly file and retain previous versions, noting the date of replacement. If using a registry, ensure the latest version is on record.
Remember, advance care planning is a personal journey, and there’s no single “right” way to approach it. Be patient with yourself, take it step by step, and start with small conversations. Your values and preferences may evolve over time, and the people involved in your plan might also change. The most important step is to initiate the conversation and begin the process of planning for your future healthcare.
Finding Advance Directive Forms: Free and Accessible Resources
Establishing your advance directives doesn’t need to be costly or complicated. Many resources offer free access to the necessary forms and guidance.
State-Specific Forms
Many states provide their own standardized advance directive forms, which are often available for free online through state government websites, legal aid organizations, or bar associations. These state-specific forms are designed to comply with local laws and regulations. Utilizing your state’s forms ensures legal validity and simplifies the process.
Online Resources
Numerous reputable organizations offer free online resources for creating advance directives. Websites like the National Institute on Aging (NIA), the American Bar Association (ABA), and PREPARE for Your Care provide downloadable forms, guides, and tools to assist you in the process. When using online resources, always verify that the forms are legally recognized in your state and that the website is secure to protect your personal information. Look for “https” in the website address and a lock icon, and review the website’s privacy policy.
Legal Assistance (Not Always Required)
While a lawyer is not always necessary to create valid advance directives, legal counsel can be beneficial, especially if you have complex financial or family situations. If you choose to consult with a lawyer, be sure to provide them with a copy of your completed advance directives. For those seeking legal assistance but concerned about costs, local Area Agencies on Aging, state legal aid offices, state bar associations, and non-profit organizations may offer free or low-cost legal services and referrals.
Alt text: Example of an advance directive wallet card from the American Hospital Association, designed for individuals to carry as a quick reference to their advance care planning status.
Some individuals also choose to carry a wallet card indicating they have advance directives and where they are stored. This can be helpful in emergency situations to quickly alert medical personnel to the existence of your plan.
The Peace of Mind of Planning Ahead: Benefits of Advance Care Directives
Creating advance care directives is an act of self-empowerment and a gift to your loved ones. The benefits of engaging in advance care planning and establishing these documents are far-reaching:
- Ensures Your Wishes are Respected: Advance directives provide a clear and legally recognized framework for ensuring your healthcare preferences are honored, even if you cannot speak for yourself.
- Reduces Burden and Stress on Loved Ones: By proactively making your wishes known, you alleviate the emotional burden and potential conflict for your family during difficult times. Advance directives provide clarity and guidance, making it easier for loved ones to make decisions aligned with your values.
- Promotes Peace of Mind: Knowing that you have a plan in place for your future healthcare provides significant peace of mind for both you and your family. It allows you to focus on living life to the fullest, knowing that your wishes will be respected.
- Improves Healthcare Experience: Advance care planning encourages conversations with your healthcare providers, leading to a more patient-centered and personalized healthcare experience. It fosters better communication and shared decision-making.
Taking the time to create advance care directives is an investment in your future healthcare and a testament to your care for your loved ones. Start the conversation today and take control of your healthcare journey.
For More Information About Advance Directives: Resources
Administration for Community Living
202-401-4634
https://www.acl.gov
Department of Veterans Affairs
877-222-8387
www.va.gov/geriatrics
OrganDonor.gov Health Resources & Services Administration
www.organdonor.gov
American Bar Association
800-285-2221
www.americanbar.org
CaringInfo National Hospice and Palliative Care Organization
800-658-8898
[email protected]
www.caringinfo.org
The Conversation Project
866-787-0831
https://theconversationproject.org
National POLST
202-780-8352
[email protected]
www.polst.org
PREPARE for Your Care
[email protected]
https://prepareforyourcare.org
This content is provided by the NIH National Institute on Aging (NIA). NIA scientists and other experts review this content to ensure it is accurate and up to date.
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