In the event that a person cannot make decisions for themself, an advance care directive is a legal document to express their values, goals for care, and treatment preferences to guide future decisions about health care. Advance directives allow a patient to identify who they want to make decisions on their behalf when they cannot do so themselves. They provide a map to enable physicians and surrogates to make good-faith efforts to respect the patient’s goals, values, and preferences when the patient does not have decision-making ability.
Who can complete an advance directive?
Everyone who will die can complete an advance directive. Because these are legal documents, it is typical that a person would need to be of legal age to complete one. Beyond that, it is never too early to complete an advance directive plan.
Do I need to complete an advance directive even if I’m healthy?
People may find it hard to think about end of life directives when they feel healthy but that’s exactly when they need to be thinking about it. They may feel that they don't know what to write down. It may help to clarify that these plans are not just about what is wanted at the end of life. They cover what is wanted for life.
Write down what is important
Start with a life mission statement. Those are the things that can guide a directive. These documents don’t require information about a medical condition or a medical treatment, but if someone were reading it and knew a life philosophy, that could guide the directive.
Don’t wait until a crisis to create a plan. It may be too late at that point to create a plan. Having a clear plan in place offers peace of mind for the individual and loved ones.
How can we have these conversations?
The more we can equip those who find themselves in a logical position to have these conversations, the more meaningful and timely these conversations can be.
What are the CMS requirements for Advance Directives?
There are requirements under CMS with regard to conversations about advanced directives, (also known as advanced care directives) at admission within certain organizations, hospitals, nursing homes, home health and hospice. Many times this amounts to a yes or no answer of if an advance directive exists.
But it doesn’t give next steps for what to do to create one if the box is checked no, or what to do if the box is checked as a yes.
So what can we do about follow up?
Ask logical follow-up questions.
If the patient says ‘yes’ they have an advance directive, the next questions could be:
Do you have a copy of it?
Can we review it together?
Does it continue to reflect your wishes as they stand today?
If the patient checks ‘no’, here are some questions to ask:
Would you like more information?
Can I share the documents with you?
Delivery affects the conversation
The way these conversations are delivered is also very important. A caregiver looking at a clipboard asking a series of questions is different from a meaningful, thoughtful, active listening conversation and will yield more thoughtful information.
More meaningful conversation will come from somebody who has thought through and completed an advance directive themselves because they can recognize and understand what the document is saying and will know that some of the questions may be hard to answer.
It is also recommended to let the patient know that during the conversation, notes will be made to make sure that the things they’ve said can be reflected back on. These may be things that will end up being on their document. It may be helpful as a note-taker to explain that a clipboard will be present and its purpose is to make sure a question isn’t missed so this document truly reflects the wishes of the person.
The writing of an effective advance care directive can come down to vocabulary and understanding. Carla Sutter, Director, AZ Healthcare Directives Registry at Health Current shared, “When I would work with clients in hospice, I remember that there were several times that families would share that their biggest concern for the transition towards end of life was around food and not eating. The family didn’t want their loved one to starve to death. That to me always stopped the conversation. I always made sure to go back to the terminology they used. I would ask, “What does starving mean to you?”
Then I would share that to me, starvation means a healthy person who can take in food and process it in their body to bring upon nutrition but they don't have access to that food. That is starvation. What is happening in your loved one’s situation is they're not able to take in that food for X, Y, Z reasons based on their diagnosis. And we talk about that. Maybe even once they take in that food, if they can take it in, it is not being processed so it's sitting in their stomach or it's going into their lungs. I would really focus on words. It is powerful to talk with them about it and it may not be reflecting what's truly happening. Language is really important for people and may reveal a trigger word.``
Home Health Workers Can Bridge the Gap
Those that work within healthcare have found that at some point topics have touched very close to their own lives.
Home health workers may be in the perfect position to have these conversations. It is valuable for healthcare workers to have completed their own life care directive before they have these conversations with patients. Oftentimes those caregivers who are in somebody's home have already bridged a relationship because this person has opened up their private space to them. It's often the easiest time to have these conversations because it is a much more personal environment than a clinic or hospital.
Home health or hospice workers can make sure people understand these are documents of choice. It is someone’s choice to have no interventions or treatments and only want comfort care or if they want everything available to them as far as treatment. These could stem from and honor faith wishes, cultural wishes, or whatever reason.
If a person has these very strong belief systems, these documents are even more important, not less important to complete.
Start creating an end of life directive
Start with a life mission statement or idea. What is important to you? What are your values? Consider what you want for your life now as opposed to what you want for the end of life. A life mission can guide a directive. You never have to put anything down around medical conditions or treatment but if someone were reading it, they would know what was important in your life philosophy.
If there has been a specific diagnosis, there are specific organizations with local and/or national chapters that are equipped to help.
From there, the starting point in each state is usually the attorney general site. Those sites will give information about the statutes arounds these documents. Learn more about what happens if someone is going between states by listening to this podcast episode.
Faith leaders can help
Many faith organizations, pastors, chaplains or other faith-leaders have been trained in having these conversations so directives reflect spiritual care. Spiritual care is part of palliative and end of life care. A patient’s spirituality may affect health care decisions and directives.
How can I complete an advance directive on my own?
For some, starting to write a document of this perceived magnitude can feel daunting. (Again, it is so important for home health and hospice workers to be equipped to help with the process.) However, there are other resources available.
For some, it's logistics that keep them from completing an end-of-life directive. They ask questions like-is there a template? Is there a tool? Am I just writing all of this out on a piece of paper? Where would I start to even eradicate a blank page? And then where do I put it? Or who do I share it with?
There are some organizations, like Five Wishes that have documents that can give someone their starting point. Every state also has their attorney general site that may help them understand what the statutes are around these documents.
How do I know that these wishes will be followed?
There are no guarantees, but being proactive and talking end of life wishes through beforehand
are key to having them followed. Part of that is making sure the person(s) chosen as your agent is the right person. Agent refers to the person who will be acting as the healthcare surrogate. They may also be referred to as the healthcare power of attorney, medical power of attorney, or healthcare agent. Oftentimes, they are just referred to as their decision maker. An agent doesn’t necessarily mean it’s the closest person because that person may not be able to, from an emotional perspective or from a belief system, follow the wishes that have been laid out.
If there is already a plan in place, that person is the voice of decisions that ave already been made. Having a document can give everyone involved more peace of mind. The document just becomes a map for how the end of a life is to be chartered.
Talk with your healthcare provider
It is always a good idea to share a plan with a care provider and ask about their perspective for the health journey. If there is some type of diagnosis, talk with the healthcare team to make sure pertinent topics have been covered in the healthcare directive.
How often should a plan be updated?
For a healthy individual, it is recommended that a plan be revisited at least every 10 years. Events that should signal a revisit would be if a change happens in their health or diagnosis, if changes happen in their family structure, living conditions or if somebody close to them passes away. Oftentimes these events will cause reflection and influence decisions or wishes.
Updating a plan should become routine. It can be scheduled with another event, like changing a clock, so it becomes a habit.