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A Comprehensive Guide to Advance Care Planning

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In times of medical crisis or during end-of-life care, individuals may be unable to articulate their healthcare preferences. While loved ones often believe they know these wishes, studies reveal a significant discrepancy, with nearly one in three end-of-life decisions being misjudged. Preparing for such situations with A Guide To Advance Care Planning ensures your desires are respected and alleviates potential burden, guilt, and depression for your family.

Research consistently demonstrates that proactive communication and planning significantly increase the likelihood of receiving the desired medical care.

Understanding Advance Care Planning

Advance care planning is a process that involves thoughtful discussion and preparation for future healthcare decisions, particularly in the event of serious illness or the inability to communicate one’s wishes. Open and honest conversations with family members and loved ones form the cornerstone of this process. Many individuals choose to formalize these preferences by creating legal documents known as advance directives.

Delving into Advance Directives

Advance directives are legally recognized documents that provide instructions regarding medical treatment, specifically designed to take effect when an individual is unable to communicate their own decisions.

The most common types of advance directives include:

  • Living Will: This document outlines your preferences for medical treatment, including life-sustaining measures, in the event of a terminal illness or permanent unconsciousness.
  • Durable Power of Attorney for Health Care: This document designates a trusted individual (also known as a healthcare proxy or agent) to make medical decisions on your behalf when you are unable to do so.

It is important to treat your advance directives as dynamic documents. Review them at least annually and update them to reflect any significant life changes, such as retirement, relocation, or a shift in your health status.

Who Benefits from Advance Care Planning?

Advance care planning is not exclusively for the elderly or those with existing illnesses. Medical emergencies can occur at any age, potentially rendering an individual unable to communicate their healthcare choices. Proactive planning ensures that your wishes are honored and that a trusted person is empowered to make informed decisions on your behalf.

Consequences of Not Having an Advance Directive

In the absence of an advance directive, state laws will dictate who is authorized to make medical decisions on your behalf. Typically, this responsibility falls to your spouse, parents (if available), or adult children. If you are unmarried and have not formally designated your partner as your healthcare proxy, they may be excluded from the decision-making process. In cases where there are no family members, some states may allow a close friend familiar with your values to assist. Alternatively, a physician may be appointed to represent your best interests. Contact your state legal aid office or bar association to understand the specific laws in your state.

The Enforceability of Advance Directives

While advance directives are legally recognized, they are not legally binding. Healthcare providers and your designated proxy will strive to honor your expressed wishes; however, circumstances may arise where strict adherence is impossible. Complex medical situations may create ambiguity about your specific desires. This highlights the critical importance of engaging in thorough conversations about your preferences, enabling your loved ones to navigate unforeseen issues effectively.

Healthcare providers may, in rare instances, decline to comply with your advance directives if the decision conflicts with their conscience, institutional policy, or accepted healthcare standards. In such cases, the provider is obligated to promptly inform your healthcare proxy and consider transferring your care to another provider.

Additional Advance Care Planning Documents and Orders

In addition to advance directives, you may wish to prepare documents that address specific medical concerns or situations not covered in your directives, such as emergency situations. Consult your physician about establishing the following orders:

  • Do Not Resuscitate (DNR) Order: This order, added to your medical chart in a hospital or nursing facility, instructs medical staff to withhold CPR or other life-support measures if your heart stops beating or you stop breathing. Synonyms include “Do Not Attempt Resuscitation (DNAR)” and “Allow Natural Death (AND).” Although a living will may address CPR preferences, a DNR order is essential within a hospital setting. Posting a DNR near your bed can prevent confusion during emergencies. Without a DNR order, medical staff will exert every effort to restore breathing and heart rhythm.

  • Do Not Intubate (DNI) Order: This document is similar to a DNR and informs hospital or nursing facility staff that you do not want to be placed on a ventilator.

  • Do Not Hospitalize (DNH) Order: This indicates to long-term care providers that you prefer not to be transferred to a hospital for end-of-life treatment.

  • Out-of-Hospital DNR Order: This alerts emergency medical personnel to your wishes regarding resuscitation measures when 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 offer guidance to healthcare professionals for immediate action during emergencies. They serve as medical orders in addition to your advance directive and are typically created when a patient is nearing the end of life or critically ill and understands the specific decisions required on their behalf. These forms may also be referred to as portable medical orders or physician orders for scope of treatment (POST). Contact your state department of health to determine if these forms are available in your area.

You may also wish to document your preferences regarding organ and tissue donation and brain donation. Furthermore, understanding care options like palliative care and hospice care can facilitate informed planning.

Initiating Advance Care Planning

To begin advance care planning, consider the following:

  • Reflect on Your Values and Wishes: Ponder what truly matters to you at the end of life. This will guide your decisions regarding future care and medical treatment.
  • Consult with Your Doctor: Medicare covers advance care planning as part of your annual wellness visit. Check with your insurance provider if you have private health insurance. Discussing your current health and potential future decisions with a healthcare provider is invaluable. For example, inquire about decisions you may face if high blood pressure leads to a stroke.
  • Select a Healthcare Proxy: Choose a trusted individual, whether a family member, loved one, or lawyer, to serve as your healthcare proxy. Discuss your values and preferences with them. If you are not ready to delve into specific treatments or care decisions, begin by sharing your general preferences through letters, videos, or casual conversations.
  • Complete Advance Directive Forms: Formalize your care and treatment decisions by completing a living will. Once you have chosen your healthcare proxy, formalize their role by completing a durable power of attorney for health care.
  • Share Your Forms: Distribute copies of your completed advance directives to your healthcare proxy, doctors, and loved ones. Store the originals in a safe place. Some states offer registries to store your advance directives for easy access by healthcare providers and your proxy.
  • Maintain Ongoing Communication: Regularly revisit your wishes and update your forms annually or after major life changes. If you revise your forms, retain previous versions and note the date of replacement. If you utilize a registry, ensure the latest version is recorded.

Remember that everyone approaches this process differently. Take it one step at a time, starting with simple conversations about what you appreciate and enjoy most about life. Your values, treatment preferences, and the people you involve in your plan may evolve over time. The most crucial element is to initiate the conversation.

Locating Advance Directive Forms

Establishing advance directives is often free or low-cost. Many states provide free access to their own forms. You can find free forms through:

  • Your doctor’s office or local hospital
  • Your state’s bar association or legal aid society
  • Online resources (ensure they are legally recognized in your state)

If you spend significant time in multiple states, consider preparing advance directives for each state and keeping copies in each location.

Do You Need a Lawyer?

While a lawyer can assist with advance care planning, it is not always necessary. If you have a lawyer, provide them with a copy of your advance directive. For planning assistance, contact your local Area Agency on Aging, state legal aid offices, bar associations, or local non-profit agencies.

Several organizations offer online form creation, download, and printing, though fees may apply. Remember to explore free options first. Always verify that forms from websites are legally recognized in your state, and ensure the website is secure, protecting your personal information.

Consider carrying a wallet card indicating you have an advance directive and where it is stored. The American Hospital Association provides an example (PDF, 40KB).

Take Control of Your Healthcare Future

A guide to advance care planning empowers you to make informed decisions about your future medical care and ensures your wishes are respected. By engaging in thoughtful conversations, completing advance directives, and maintaining open communication with your loved ones and healthcare providers, you can gain peace of mind and ensure your values are honored. Start the conversation today.

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