Navigating medical decisions during an emergency or at the end of life can be overwhelming, especially when you’re unable to voice your preferences. It’s a common assumption that loved ones intuitively know your wishes for medical treatment, but studies reveal a significant gap in understanding. Research indicates that individuals guess incorrectly in nearly one out of three end-of-life care decisions for their loved ones.
Studies emphasize the importance of proactive communication and planning regarding future medical care to ensure your wishes are honored. Advance care planning not only increases the likelihood of receiving desired medical treatment but can also ease the grieving process for your loved ones, reducing feelings of burden, guilt, and depression.
What is Advance Care Planning?
Advance care planning is a process of thoughtful discussion and preparation for future medical decisions, particularly in situations where you may face serious illness or become unable to communicate your preferences. The cornerstone of advance care planning is engaging in meaningful conversations with your family and loved ones about your values and healthcare wishes. Many individuals also choose to formalize these preferences in writing through legal documents known as Health Care Directives.
Alt text: Advance Care Planning Guide Cover: Learn about creating your healthcare plan with NIA’s conversation guide.
Advance Care Planning: A Conversation Guide
For those seeking more in-depth information on advance care planning, the National Institute on Aging (NIA) offers a helpful guide. This resource provides conversation starters, worksheets, and valuable insights to aid you in the planning process.
Decoding Health Care Directives
Health care directives are legal documents that outline your instructions for medical care, activated only if you become incapable of communicating your own wishes. They serve as a roadmap for healthcare providers and loved ones, ensuring your voice is heard even when you cannot speak for yourself.
The two most prevalent types of health care directives are:
- Living Will: This document specifies the types of medical treatments you would or would not want to receive in specific situations, such as if you become terminally ill or permanently unconscious. It allows you to refuse medical care, including life-sustaining treatment.
- Durable Power of Attorney for Health Care (Health Care Proxy): This document designates a person you trust, known as your health care agent or proxy, to make medical decisions on your behalf when you are unable to do so. This person should be someone who understands your values and is willing to advocate for your wishes.
It’s crucial to view your health care directives as dynamic documents. Regularly review them – ideally at least annually and whenever a significant life event occurs, such as retirement, relocation to a different state, or a notable change in your health status – and update them to reflect your current preferences.
Who Benefits from a Health Care Directive?
Health care directives are not exclusive to the elderly or those with existing illnesses. Unexpected medical crises can happen at any age, potentially leaving anyone unable to make or communicate healthcare decisions. Proactive planning through a health care directive is a responsible step for adults of all ages. It ensures you receive the medical care you desire and empowers a trusted individual to advocate for your well-being if necessary.
The Implications of Not Having a Health Care Directive
Without a health care directive in place, and in the event you are unable to make medical decisions independently, state laws will dictate who is authorized to make these decisions on your behalf. Typically, this authority defaults to your spouse, parents (if available), or adult children. However, if you are unmarried and haven’t legally designated your partner as your health care proxy, they might be excluded from the decision-making process. In the absence of family members, some states may allow a close friend familiar with your values to participate in the decision-making, or they might assign a physician to act in your best interest. To understand the specific laws in your state, it’s advisable to contact your state legal aid office or state bar association.
Will a Health Care Directive Guarantee Your Wishes Are Honored?
While health care directives are legally recognized, they are not strictly legally binding. This means that while your healthcare providers and proxy will make every effort to respect your directives, situations may arise where adhering to your wishes precisely is not possible. Complex medical scenarios, where your preferences might be unclear, can present such challenges. This underscores the significance of having detailed conversations about your preferences with your loved ones in advance. Open communication can significantly aid them in navigating unforeseen complexities.
Situations might occur where a healthcare provider feels unable to honor your health care directive. This could stem from conflicts with:
- The healthcare provider’s personal conscience
- The healthcare institution’s policies
- Established healthcare standards
In such instances, the healthcare provider is obligated to immediately inform your health care proxy and consider transferring your care to another provider who can better align with your directives.
Additional Advance Care Planning Orders and Forms
Beyond standard health care directives, you might consider preparing specific documents to express your wishes regarding particular medical issues or situations not fully addressed in your directives, such as emergency situations. Consulting with your physician about establishing the following orders can be beneficial:
- Do Not Resuscitate (DNR) Order: A DNR order becomes part of your medical record, instructing medical personnel in a hospital or nursing facility that you do not wish to receive cardiopulmonary resuscitation (CPR) or other life-support measures if your heart and breathing stop. This order is sometimes referred to as a “Do Not Attempt Resuscitation” (DNAR) or “Allow Natural Death” (AND) order. Even if a living will states your preference against CPR, a DNR order in your medical file is crucial when admitted to a hospital. Displaying a DNR order near your hospital bed can prevent confusion during emergencies. 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, a DNI order informs medical staff in a hospital or nursing facility that you do not want to be placed on a ventilator.
- Do Not Hospitalize (DNH) Order: A DNH order is relevant for long-term care settings, such as nursing homes, indicating your preference not to be transferred to a hospital for treatment at the end of life.
- Out-of-Hospital DNR Order: An out-of-hospital DNR alerts emergency medical responders to your wishes regarding resuscitation measures if you are outside of a hospital setting.
- Physician Orders for Life-Sustaining Treatment (POLST) and Medical Orders for Life-Sustaining Treatment (MOLST) Forms: These forms provide actionable medical orders for healthcare professionals in emergency situations, complementing your health care directive. POLST/MOLST forms are typically created when you are seriously ill or nearing the end of life and have a clear understanding of the specific medical decisions that may need to be made. These forms may also be known as portable medical orders or physician orders for scope of treatment (POST). Check with your state department of health to determine the availability of these forms in your location.
Furthermore, consider documenting your wishes concerning organ and tissue donation and brain donation. Exploring care options like palliative care and hospice care is also a valuable aspect of advance care planning.
Taking the First Steps in Advance Care Planning
Initiating advance care planning involves several key steps:
- Reflect on Your Values and Wishes: Consider what is most important to you regarding quality of life, end-of-life care, and medical treatment. This self-reflection will guide your decisions about future care.
- Discuss Health Care Directives with Your Doctor: Advance care planning is covered by Medicare as part of your annual wellness visit. If you have private health insurance, verify coverage with your provider. Talking to your doctor can provide insights into your current health and potential future healthcare decisions. For instance, you might discuss decisions related to managing complications from conditions like high blood pressure, such as stroke.
- Choose Your Health Care Proxy: Select a trustworthy individual – be it a family member, close friend, or lawyer – to serve as your health care proxy. Discuss your values and preferences with them openly and honestly. If you’re not ready to discuss specific treatments, start with general preferences. Sharing letters or watching informational videos together can also facilitate these conversations.
- Complete Your Health Care Directive Forms: Formalize your care and treatment decisions by completing a living will and a durable power of attorney for health care to officially designate your chosen proxy.
- Share Your Documents: After completing your health care directives, make copies and store the originals securely. Distribute copies to your health care proxy, doctors, and lawyer. Some states offer registries for storing advance directives for easy access by healthcare providers and your proxy.
- Maintain Ongoing Communication: Continue discussing your wishes and review your forms at least annually or after major life changes. If you update your forms, retain previous versions, noting the date of replacement. If using a registry, ensure the latest version is recorded.
Remember that the advance care planning process is unique to each individual. Be flexible, approach it step-by-step, and start with small conversations, such as discussing what you value most in life. Your values, treatment preferences, and even your chosen proxy may evolve over time. The most important step is initiating the conversation and starting the planning process.
Accessing Health Care Directive Forms
Establishing your health care directives can often be done at minimal or no cost. Many states provide their own forms free of charge. Here are resources for finding free health care directive forms in your state:
For individuals who reside in multiple states, consider preparing health care directives using the forms specific to each state and keeping copies in each location.
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Is a Lawyer Necessary for Creating Health Care Directives?
While a lawyer can provide assistance, it is not mandatory to have legal representation to create valid health care directives. However, if you have a lawyer, providing them with a copy of your directives is advisable. For planning assistance, contact your local Area Agency on Aging. Additional resources for legal aid and referrals include state legal aid offices, state bar associations, and local non-profit, foundation, and social service agencies.
Numerous organizations offer online platforms to create, download, and print your forms, although some may charge fees for these services. Before paying for online services, remember that free options are readily available. Free online resources include:
When using forms from a website, verify their legal recognition in your state. Ensure the website is secure and protects your personal information. Review the website’s privacy policy and confirm the website address begins with “https” and displays a lock icon.
Some individuals choose to carry a wallet card indicating the existence of their health care directive and its storage location. An example from the American Hospital Association (PDF, 40KB) is available for reference.
You May Also Be Interested In
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For More Information About Advance Directives
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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