Shake Up Your Advance Care Plan

Advance care planning is essential for every adult (anyone aged 18 and over), regardless of their marital / partner status, family support or health condition. It ensures that your health care preferences are honored in the event of an unforeseen crisis.

"Traditional" approaches often focus on estate planning and the designation of a health care proxy, but the reality is that the entire advance care planning process is critical for everyday life. This article outlines a dynamic approach to advance care planning, emphasizing the steps of what I refer to as Advance Care Planning 4D: Decide, Document, Designate and Discuss.

Advance care planning involves making decisions about the health care you would want — and not want — if you become unable to speak or otherwise unable to advocate for yourself. These decisions are based on your personal values, priorities and preferences.

The process typically includes completing documents such as a HIPAA release and a Living Will/Personal Directive which allow access to authorized health care information, designate at least one individual to carry out your health care preferences on your behalf, and specify your preferences.

Many people presume that advance care planning is only necessary as part of their estate plan. However, having these documents in place is crucial today and every day moving forward. Whether you are involved in an accident (for example, while driving an auto, biking, rollerblading, skateboarding, hiking or playing a sport), affected by an act of nature (whether hurricane, earthquake, flood or fire) or experience a medical crisis, having a plan prepared ensures your
health care preferences are known and respected.

To ensure a comprehensive and effective advance care plan, follow these four steps:

1. Decide: The first step is to reflect on your health care values, priorities and preferences. Consider what types of medical treatment you would want or do not want in various situations. Think about scenarios such as life-sustaining measures, resuscitation efforts and long-term care options. This decision-making process is deeply personal and should align with your values and beliefs about quality of life and medical interventions.
   
2. Document: Once you have made your decisions, it is crucial to document them clearly. This involves creating a living will or personal directive that outlines your health care preferences in detail. It provides specific instructions about the medical treatments you want and do not want, ensuring that your preferences are honored even if you cannot communicate them yourself.
   
   When documenting your preferences, be as detailed as possible. Specify your choices regarding resuscitation, mechanical ventilation, artificial nutrition and hydration and other life-sustaining treatments. Clarity helps to prevent confusion and ensures that your health care proxy, health care team and support network understand your preferences.
   
3. Designate: Choosing a health care proxy, also known as a health care agent or medical power of attorney, is a critical step. This person will carry out your medical decisions on your behalf if you are unable to do so. In addition to your primary health care proxy, consider designating an alternate; this individual can step in and represent you if your primary proxy is unavailable or unable to serve. It is essential to talk with your proxies to confirm their willingness to take on this responsibility and their understanding of your preferences.
   
   When designating your health care proxy and alternate proxy, it is important to choose individuals who embody certain key characteristics to ensure they can effectively advocate for you. Proxies should be persistent and unwavering in ensuring your preferences are honored. They must be ethical, acting with integrity and honesty in all situations. The ability to figure things out and ask pertinent questions is crucial, because medical situations can be complex and change rapidly.
   
   Excellent communication skills are essential for proxies so they can accurately convey your preferences clearly to health care providers and members of your support network. Your proxy should advocate for your rights and decisions, remaining objective and not imposing their own personal beliefs or values. It is also helpful if they are knowledgeable about death with dignity, and grasp the nuances and legalities involved. By selecting someone with these qualities, you can have confidence that your health care proxy or proxies will act in your best interest at critical moments.
   
4. Discuss: The last step is to discuss your advance care plan with the people involved in your care, including your health care team and chosen members of your support network. Open communication is key to ensuring that everyone understands your preferences and is prepared to honor them. This discussion helps avoid misunderstandings and ensures your decisions and preferences will be respected.
   
   During these conversations, provide copies of your documented preferences to your proxies, members of your support network and health care providers. Review the details of your plan, address any questions or concerns and make sure everyone is comfortable with their roles and responsibilities. Regularly revisit these discussions, as your preferences and circumstances may change over time.

Store paper copies of your advance care plan in easily accessible and visible locations to ensure they are available in an emergency. Consider keeping a copy posted on your refrigerator, as this is a common place for first responders to check. Carrying a copy in your wallet ensures you always have your directives with you, and placing one in your glove compartment means it is available if you are in a car crash. Including them in your "go bag" and plan is also useful.

Additionally, confirm that your health care proxy, alternate proxies and other members of your support system have current, accurate and easily accessible paper copies of these documents. This ensures that everyone involved in your care is on the same page and can act swiftly and appropriately according to your preferences.

Regularly updating and distributing the documents to your support network helps prevent confusion and guarantees that your preferences are honored no matter the situation.

It is common to encounter challenges when creating your advance care plan, such as difficulty identifying a suitable health care proxy. If you are struggling to identify someone to serve in this role, do not let that stop you from planning. Start by focusing on your priorities, preferences, personal directive / living will and other relevant documents. Once these are in place, continue to explore potential proxies.

Additionally, remember that advance care planning is a dynamic process. Your preferences and circumstances — and those of your designees — may change, so it is important to review and update your plan regularly. Make adjustments as needed to ensure your plan accurately reflects your current preferences.

Advance care planning is essential to ensure that your health care preferences are respected, particularly in a crisis, when you may be unable to advocate for yourself. With the 4D process, you can create a comprehensive and dynamic plan that provides clarity and peace of mind for you and support network.

Remember, advance care planning eliminates the uncertainty and emotional burden on your support network by clearly stating your medical preferences. When you are ready to start or revise your advance care plan, seek help from health care providers, elder law attorneys and independent board certified patient / health care advocates to guide you through the process.

Taking these proactive steps today ensures that your health care preferences are honored, no matter what the future holds.

Ailene Gerhardt, MA, is an Independent Board-Certified Patient Advocate, Certified Senior Advisor, Solo Aging educator and founder of the national patient advocacy practice Beacon Patient Solutions LLC. Her advocacy work includes a focus on solo aging, and in 2021 she founded the Navigating Solo Network, an online clearinghouse of resources specifically for solo agers. She lives in Boston and can be reached via email: [email protected].
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