Advance Health Care Directives: Needs to Be More Than Just Checking Boxes

One of the main documents in any estate plan is the Advance Health Care Directive, which is also known as a Living Will. It is called a “Living Will” because it is meant to give direction while you are still living unlike a Last Will and Testament that only becomes effective upon death. The Living Will document is vital to a comprehensive estate plan. Yet few people have had these important conversations with medical experts prior to a medical crisis.

To find out what information you should know about advance care planning prior to a medical crisis, we sat down with Michelle Finamore at PyxisCare Management in Dallas, Texas. Finamore is a nurse practitioner, board certified in hospice and palliative care with over 12 years of experience.

Q: What is something you wish you could impress on people about Advance Directives?

A: They are meant to be done when you're healthy; before they are needed. That's when they're most often done usually in an attorney or estate planner office setting. But, what most people forget, is that as they age and their health changes, the directive needs to be reviewed preferably with a health care provider. I see health directives that are very vague, and they really do need to be updated as time passes so that they address the person's changing health concerns.

Q: What do you see that is often missing from Advance Directives?

A: More information and more instruction. The person named to be the medical power of attorney, usually referred to as the “agent,” or “MPOA,” so often has no idea what was actually meant or intended or desired by the person who made the Advance Directive, sometimes referred to as the “principal.” ?The principal really needs to have a conversation ahead of time with their agent. The agent has to be able to stand up to doctors and family members and carry out the principal’s wishes. That can only happen if they know those wishes. The agent can only have the courage of their convictions if they know for a fact what the principal wanted.

When making their Advance Directive, I really encourage people to give more direction, rather than less, to their agent, so the agent can simply be a messenger of the instructions and not a true decision maker. The principle is the decision maker.

Also, just as the Advance Directive needs to be updated from time to time or as needed, the conversation with the agent should not just be a one and done sort of thing. There needs to be multiple conversations about the principal’s wishes and desires regarding how he or she wants to live and how he or she wants to die as these often change over time.

Q: What is a common misunderstanding of Advanced Health Care Directives that you see often in your practice?

A: An Advance Directive often gets mistaken for a “do not resuscitate (DNR)” order. The Advance Directive is not a doctor's orders. It is a guide to the agent on the principles wishes and desires on complex medical decisions at a time when the principle is no longer to make their own decisions regarding advance medical care. This occurs when someone has an irreversible illness or disease. That is why this needs to be more than just checking boxes about life support being administered or withheld, preferences regarding organ donation, or burial versus cremation. That's why there needs to be a conversation with the agent ahead of time and more direction and instructions in the document.

A DNR is a doctor’s order that only comes to play if one’s heart or breathing stops and 911 is called to the home. A DNR is considered when someone has a disease in advanced stages and has expressed wishes to die peacefully in their home.

Q: What is a common thing done in Advance Directives that you view as a mistake or not conducive to carrying out proper and responsive medical care for the principal?

A: Listing multiple agents to serve at the same time as co-medical power of attorney agents. Yes, for most things, two heads are better than one, but when it comes to making medical decisions there needs to be one person in charge to make the final decisions. Emotions can run extremely high in these types of end-of-life situations, and all too often past baggage of the co-agents get in the way and often lead to arguments and stalemates. This can interrupt care for the principal and lead to all sorts of problems. It’s best to name one person to serve at a time. But do name backup agents just in case your original choice cannot serve for whatever reason.

Again, discussion with extended family prior to a healthcare crisis can help prevent chaos and confusion as well as hurt feelings. It’s helpful to remind loved ones that these medical decisions and advance care planning are separate conversations from financial estate planning.

Q: As a hospice and palliative care nurse, what is your main frustration when using the Advance Directive during a patient’s care?

A: It is too often apparent that the agent has not had in-depth discussion with their loved one regarding these complex medical decisions. A lot of the time, the instructions in the medical directives are vague and the intent of the principle doesn't come through. And, for the most part, a conversation was never had to back up the Advance Directive and add more understanding about what the principal truly intended. So, it's very confusing in the moment to make these life-or-death decisions. In addition to life-or-death decisions, many medical devices and interventions can be seen as extending the dying process instead of prolong life. The Advance Directive is supposed to give enough direction and instruction so that the agent can just be the messenger of the principal’s wishes; not a true decision maker, since the principal is supposed to be the true decision maker.

I also wish I saw more specificity in the instructions. This is hard to do when you're young and healthy and making these decisions, which again, is why this is supposed to be updated from time to time as your health changes. So, if you do have a specific diagnosis later in life, that can be specifically talk about in the Advance Directive. This would be so beneficial for the principal's care in the moment the Advance Directive is actually being used. For example, there are many issues and scenarios that can be predicted as likely to arise with disease. For dementia/Alzheimer’s disease, issues such as housing options, tube feedings, and infections are common issues that occur and best to be discussed early in the disease trajectory. For heart disease, cancers, and lung disease, there are also common scenarios to think through and educate yourself and your loved ones on before a crisis.

Q: And lastly, based on your experience as a hospice and palliative care nurse, do you have any tips for people on what to do with their healthcare documents once they have signed them?

A: Make sure your family or the people you've named as agents knows where to find the documents. Make sure they are easily accessible. You can usually have your healthcare documents on file with your medical records. But you can also give an electronic PDF copy of the healthcare documents to your named agent so they can easily pull them up on their phone or print them. These documents are meant to be used and accessed. And most importantly, discuss and review! The more often you talk about these issues with your loved ones, the less awkward the conversation becomes and all benefit from having these discussions prior to a health care crisis.

If you have questions about your Estate Planning, especially about your Advanced Health Care Directive, please don’t hesitate to contact us. We’re here to help.