Frequently Asked Questions
What is Honoring Choices Florida?
Honoring Choices Florida is a major initiative with the mission to promote the benefits of, and improve the processes for, advance care planning. It launched in Northeast Florida in 2014. It is modeled after Respecting Choices®, a pioneering program in advance care planning based in La Crosse, Wisconsin. Community Hospice & Palliative Care serves as program coordinator, working collaboratively with local hospitals and community partners to integrate advance care planning into all aspects of routine health care.
What is advance care planning?
Advance care planning, or ACP, is a process of understanding, reflecting on and discussing future medical preferences in the event of a sudden illness or injury or a chronic or life-limiting illness. ACP includes:
Understanding your health care treatment options.
Clarifying your health care goals.
Weighing your options about what kind of care and treatment you would or would not want.
Making decisions about whether you want to appoint someone to speak on your behalf, if you are unable to express your wishes.
Making a decision about whether you want to complete an ACP document, putting your wishes in writing.
Communicating your wishes and sharing any documents with your family, friends, clergy, other advisers, physicians and other health care professionals.
Why is it important?
Starting a conversation about end-of-life care can be difficult for all of us, whether we are physicians, patients, family members, religious and community leaders or other health care professionals. It is, however, imperative that these conversations happen so we get the care we would want. Once they occur, it is equally critical that patients’ choices are honored by those who care for them.
How is this approach to planning different from other approaches?
Many approaches to planning are created to assist by providing more information and by asking basic, straightforward questions for the individual to answer about their values and priorities. While good information is always needed, one can only make authentic decisions if one’s values and goals are clear and thought out. The questions that are often provided in other approaches assume that it is relatively straightforward for individuals to know the answers to the questions. Often this is not true.
This model views the planning process as more complex and challenging. Figuring out what might be important and have priority at some future time is not a process most are familiar with. Sorting through these values is easier with a guide. The Honoring Choices Florida model is a comprehensive, research based approach which has proven to better prepare someone and their selected decision maker to face the challenges of complex medical decision-making when needed. It addresses these points:
Identifies and explores the fears, concerns and gaps in understanding of each person and addressing these issues as needed.
Reviews the person’s experiences of illness and medical decision-making and assists the person to use those “lessons learned” in their decision making.
Explores the person’s values, goals, and beliefs, and considers the importance of each relative to the state of illness that may or may not exist.
Identifies questions that the person still needs to have answered and develops a plan to obtain this needed information no matter if it is medical, religious/spiritual, legal, and so forth.
Provides a safe and open forum for discussion between the person and those people to whom they are close, so these issues can be fully and openly discussed. Ensures plans are articulated in a clear and complete manner for any stage of illness. This approach significantly increases the likelihood that a person’s decisions and wishes are understood and followed when needed.
Is it an aim of this model to lower health care costs?
No. The aim of advance care planning is to help establish effective ACP systems and processes so all individuals have the opportunity to plan for possible, future medical situations and to have their values and goals respected if a time comes when the person can no longer speak for himself/ herself.
Does this approach to advance care planning ration care or lead to earlier deaths?
No. Rationing care means that an effective medical treatment will not be provided because the treatment has been determined too costly. In some countries this is a social decision sanctioned after political debate and decision-making. Our process focuses on assisting individuals and their families to make informed decisions about their future healthcare.
Effective ACP can lead to lower healthcare cost as it becomes possible to avoid treatments that are not wanted by the patient because they are not effective. If cost saving is achieved in this manner, it is because the patient's values and views have determined that the burdens of some medical treatment are not worth the potential benefits. In regions where this approach has been in place for many years, studies show it does not lead to earlier deaths.
What are the expected benefits of this type of planning for me and my family?
In communities that have implemented this ACP program have demonstrated:
Improved understanding of the care an individuals wants among physicians, other health care professionals, and friends and family.
Less conflict among family members at the end of life.
Significant improvement in care received at the end of life.
Fewer hospital readmissions and fewer days spent in intensive care.
Less depression, anxiety and guilt in the surviving relatives.
Why does the program support the use of non-physician advance care planning facilitators?
We believe that all patients and their families deserve accessible, high-quality ACP services. Experience and evidence have clearly led to the conclusion that physicians simply do not have the time to provide a service that, typically, can take 30 to 90 minutes depending on the patient and the stage of planning. Physicians are trying to address the needs of many patients and, clearly, treating the ill always needs to be a priority.
The physician does have a key role as a member of the ACP team. ACP needs to be a team effort where ACP facilitators guide people through this complex conversation and call on the expertise of others, including physicians when needed. Physicians also have an important role to initiate conversations, to motivate their patient to plan, to provide medical information as needed, to review plans over time so they stay up-to-date and become more specific as illness progresses and to use plans to make decisions when appropriate.
Is it possible to plan for future medical care when there are so many unknown circumstances that cannot be anticipated?
It is clearly impossible and would be dangerous to plan for everything that might afflict a human being. Fortunately, it is not necessary to attempt such planning. When planning is conceived as something that can be done over time and in relationship to your health condition, it becomes possible to create a more realistic planning experience.
When adults are healthy or do not have a progressive, life-limiting condition, there are only two important future medical decisions that are needed: Selecting a well-qualified person— typically a trusted family member or friend—to make your health decisions when you cannot; and to determine when a serious, permanent neurological injury would be so bad that you would want to change the goals of your medical care. With this approach to planning, you can express a plan to identify who will make your decisions when you cannot and when a serious brain injury would be so bad that the goals of medical treatment should change. In making this plan you can indicate what treatment you would want or not want, but the actual decision would be made in the moment by your appointed healthcare surrogate.
This plan needs to be reviewed and reconsidered over time, but you really do not have to plan for any other medical decisions until you have a serious condition that is getting worse, and/or you are suffering significant or more frequent complications. At this point in time it is clear that more complications might be expected. Here, what you need to be prepared for is how to proceed with the next complication when the outcome of that treatment is not good. Consider when an outcome would be so bad that you might change the goals of your care. Again, such planning prepares the patient or the healthcare surrogate to actually make medical decisions in the moment.
What is an advance care planning document?
An advance care planning document is a multiple page document that records your health care surrogate, the person you name to make decisions for you in the event you are unable to speak for yourself. It also records your wishes and preferences if two physicians confirm you have a terminal or end-stage condition or if you are in a persistent vegetative state. This document is used as a communication tool when you cannot speak for yourself. It helps guide your surrogate, family, loved ones, and physicians in honoring your wishes.
Does my doctor have to follow my wishes in my advance directive?
Laws regarding advance directives give health care providers immunity from liability if they follow your wishes. Your health care provider can refuse to carry out your wishes if they personally object to them or feel they are medically inappropriate. The best way to avoid this is to talk with your providers about your goals, values and beliefs and ensure they understand what wishes you would like followed should someone else have to make these decisions for you.
What is a health care surrogate?
A health care surrogate is the person you identify to speak on your behalf if you are unable to make your own health care decisions. This person should know your wishes and be able to communicate them to your health care providers when necessary, so it is very important for you to share your wishes with your surrogate. Your surrogate only makes decisions for you if a physician confirms you are unable to do so.
Does my health care surrogate have to follow my wishes?
The wishes stated in your advance directive serve as a guide to both your surrogate and health care providers. Should your surrogate interpret them differently than you intended, or feel they are unable to carry out the wishes as stated, they are able to make different decisions than what is indicated in your directive. The best way to ensure your surrogate follows your wishes is to talk with them about your goals an values and make sure they understand what their role entails.
If I name a health care surrogate, do I give up the right to make decisions for myself?
Naming a surrogate does not take away your ability to make your own decisions. As long as you are capable, you always have the right to make your own decisions or to revoke your directive.
If I don't have a surrogate named, will the hospital just pick my oldest child to make my decisions?
If you haven't designated a health care surrogate, your medical provider will assign a "proxy" to make your health care decisions. In Florida, they must follow a hierarchy to choose the proxy, at times requiring a majority of your family members to agree and make decisions. This often ends up in disagreements and additional stress for your loved ones.
What if I outlive my health care surrogate?
Most advance care plans allow you to name one or more alternate surrogates. If your primary surrogate is unable to fulfill the role for any reason, the first alternate becomes your new decision maker. You may want to update your advance care plan to reflect your alternates. Before making any revisions to your plan, talk to your new surrogate(s) about your wishes.
Does completion of a document require witnesses and notary?
Yes and no. Two witnesses must sign the document and the person you designate as your surrogate cannot be one of the witnesses. Only one witness can be a spouse or a blood relative. Florida law does not require the document to be notarized.
Does an advance care planning document expire?
While there is no expiration date, it is important to review your directive whenever there is change in decade, death of a loved one, divorce, a new diagnosis or a decline in your health. We call these the “5 D’s”.
Where should I keep my advance care planning document and who should get copies?
Keep a copy of your document in your home in an easy-to-reach place. Many people keep a copy in the glove compartment of their car and in their suitcase when traveling. Wallet cards are also available. Give copies of your document to your health care surrogate, family members, physicians, and hospitals where you seek treatment. A copy is as good as the original so make sure those who would be involved in your care have a copy so that they know what you would want.
Is my advance care planning document honored in other states?
The Honoring Choices Florida document was developed based on Florida statutes and was approved by the legal departments of our health system/hospital partners. Health care directive requirements may vary from state to state, however we find that laws in other states are usually very similar to Florida’s and in some states, the laws are more liberal but not more stringent. However, if you spend part of the year in another state, then it would be helpful to discuss your document with your physician in the other state.
Is a living will the same thing?
Yes and no. A living will is generally more limiting because you only make decisions about life-sustaining procedures and it may not identify a person to speak on your behalf. An advance care planning document provides many more options for sharing your wishes and preferences for future health care. And it includes assignment of your health care surrogate, the person who will speak on your behalf, if needed.
I have Five Wishes. Is that the same?
Five Wishes is similar to an advance care planning document. Five Wishes identifies preferences along with naming a surrogate in a format that is more narrative in style. Just make sure you have had a conversation about your wishes with your surrogate, family and physicians and given them all copies of your document.
I have a living will and surrogate form from my attorney. Is this the same?
The documents may reflect your wishes and are most likely valid. But for your wishes to be honored, it is important that you have a conversation with the person or people you selected to be your surrogate(s), other family members who would be involved in your care, and your physicians. Also, make sure they all have a copy of your documents.
How can my organization become involved?
We are excited to partner with health providers, faith-based organizations, community agencies, senior services providers, estate planners, attorneys and others. Contact us to discuss how we can help implement an advance care plan program in your organization.
How can I become a certified facilitator?
Details regarding training classes for certification are listed under the Events tab on this website with a link to register for a class.
Do you provide presentations in the community?
Yes! Staff are available for presentations to groups in your community, at your church, to professional associations, and to any other gathering where you would like to help educate others about ACP. Contact us via email: HonoringChoicesFL@communityhospice.com or call us at 877.227.0050