Creating an Advance Directive for Your Loved One: A Guide for Austin Caregivers

How do we want to be treated when we get to the end of our lives? What decisions would we like made on our behalf if we are unable to make them? Life is uncertain, and it’s important to have a plan in place. Creating an advance directive can help ensure that your wishes or those of your loved ones are known and respected.

An Advance Directive is a document that lets family and medical professionals know your desires should something happen. Work with your loved one to get these documents drafted while they are still able to speak clearly about their choices. Collaborate with them to ensure you understand what they want. As a part of the process of creating an advance directive, your loved one will often appoint someone as their healthcare proxy. This person will make medical decisions according to their wishes if your older adult cannot do so themselves. Source: Death with Dignity

Practical Steps to Creating an Advance Directive

1. 1. Start the Conversation: Use resources like the downloadable workbook, “What Matters to Me” from The Conversation Project, to guide discussions about values and wishes for end-of-life care.
   2. Consult Healthcare Professionals: Discuss potential future health risks with your loved one’s doctor. Including their physician ensures everyone is on the same page for long-term care decisions. It is worth noting that talking with the doctor about advance care planning during a wellness visit is covered by Medicare.
   3. Choose a Healthcare Proxy: Help your loved one select a healthcare proxy who will make medical decisions if they are unable to do so. If you do not feel you agree with the decisions made in the Advance Directive, steer them to choose someone more in line with their values. If there is a trusted medical professional in your family, perhaps this person might be better suited for this role. The Conversation Project offers a guide on how to choose the right proxy here.
   4. Draft the Document: Utilize online templates from trusted organizations such as the National Institute on Aging or The Conversation Project. Ensure the document complies with state laws.

   5. Discuss Specific Wishes: Address specific medical interventions like CPR, ventilation, feeding and hydration, pain management, and organ donation. Important considerations include:

      • • • • • Use of CPR
              • Ventilators and life-sustaining apparatus
              • Feeding/hydration levels
              • Comfort care and pain medications
              • Organ donation card
              • Preferred place of death
              • Blood transfusions or organ transplants
   6. Legal Formalities: Have the directive notarized if required by your state. Share copies with the healthcare proxy, family members, and healthcare providers. Be aware that laws governing how a state will honor your Advance Directive vary from state to state. Often, one state will not honor an Advance Directive created in another state. If your loved one travels or resides in several states, it is recommended to create an Advance Directive in each location.
   7. Review and Update Regularly: Review and update the Advance Directive regularly to reflect any changes in health or preferences.

What is a DNR (Do Not Resuscitate) Order?

A DNR order is a document that indicates to emergency and medical responders that the person does not want CPR or other life-restoring measures should their heart or breathing stop. If your loved one has indicated they would like to donate their organs, they need to note that the desire to donate supersedes the DNR since there may be a need to keep the heart beating until the organs can be taken for donation. Source: National Institute on Aging

Special Considerations for Dementia Caregivers

Caring for someone with dementia presents unique challenges that require thoughtful planning and preparation. Here’s how caregivers can navigate this delicate process:

Start Conversations Early

As dementia progresses, it becomes harder for individuals to express their wishes for care. Engage in conversations about healthcare preferences as soon as dementia is diagnosed. Early-stage dementia may present subtle symptoms, allowing for more coherent discussions. By starting these conversations early, caregivers can better understand their loved one’s values and wishes, avoiding crises and ensuring decisions reflect the person’s true desires.

Seek Community Support

Caregivers often face emotional and logistical challenges when planning care for someone with dementia. It is important to seek support from healthcare professionals, support groups, and organizations specializing in dementia care. Involving other family members and friends in the planning process can provide a broader support network and alleviate the caregiver’s burden. The Conversation Project’s resources, such as the “Your Conversation Starter Guide for Caregivers of People with Alzheimer’s or Other Forms of Dementia,” provide valuable tools for facilitating these discussions.

For more detailed guidance, refer to the Conversation Starter Guide for Caregivers of People with Alzheimer’s or Other Forms of Dementia.

What It Means to Be a Healthcare Proxy

Being a healthcare proxy means you are responsible for making medical decisions on behalf of someone who cannot make those decisions themselves. Here’s a summary of the critical considerations before accepting this role:

1. Understanding the Role:

   • Medical Decisions – You will make decisions about treatments, tests, and procedures based on the person’s known preferences and values.
   • Legal Power – You will have legal authority to access medical information and make decisions.

2.  Personal Considerations:

   • Comfort Level – Assess if you are comfortable making healthcare decisions and advocating for the person’s wishes.
   • Readiness – Ensure you are ready and able to take on the responsibility.

3. Communication:

   • Conversations – Engage in detailed discussions with the person about their healthcare wishes and preferences.
   • Preparation – Discuss and understand their goals, fears, and specific preferences for care.

4. Decision-Making Challenges:

   • Preferences vs. Reality – Sometimes, it might not be possible to fulfill all of the person’s preferences due to medical or logistical reasons. Make decisions that align as closely as possible with their values.
   • Honesty and Clarity – If you are uncomfortable with the role or unable to fulfill it, communicate openly and respectfully with the person who asked you to be their proxy.

Creating an advance directive is a loving and responsible step to take with your loved one. It ensures their wishes are honored and reduces the emotional burden on family members during difficult times. At Town Square NW Austin, we understand the challenges caregivers face and are here to support you. Our compassionate environment and expert care aim to improve the quality of life for both our members and their families.

For more information about our programs and how we can support you, contact us today.