All You Need to Know about Advance Care Planning
If you’ve been considering advance care planning (ACP), you’re in good company. More than 90 percent of Americans believe it is important to discuss the treatment and palliative options they would choose to pursue if they were to become incapacitated by medical issues in the future, according to The Conversation Project’s 2018 National Survey. Yet, they also report that only 32 percent have actually conducted these conversations.
Why? Most people don’t know where to begin. Some don’t even fully understand what advance care planning entails. But there is someone who can help: your doctor. Here’s how.
UNDERSTANDING ADVANCE CARE PLANNING
ACP ensures your future care wishes are known in the event you are unable to communicate due to a health condition. These advance directives are written healthcare instructions that give you the opportunity to identify who you want to make decisions for you if necessary and also which medical treatments you do or don’t want.
ADVANCE CARE PLANNING DOCUMENTS
Healthcare Proxy – This document allows you to appoint someone to act as your agent to make medical decisions such as the path of care, requesting or declining life-support treatments, authorizing or refusing certain medication or procedures and/or deciding where treatment will be received.
Living Will – In this document you state your wishes regarding end-of-life medical care such as CPR, being on a ventilator, receiving nourishment through a feeding tube, artificial hydration and pain management for example. You might also include your wishes on organ donation after your death.
THE BENEFITS ARE BIG
Yes, it’s practical to plan ahead but you may not realize the peace of mind ACP can also bring for you and your loved ones. What’s more, advance care planning isn’t just something to consider when you’re sick, it’s an opportunity to be proactive and take control of your health early on too.
For You – The biggest individual benefit is that it gives you a voice at a time when you can’t speak for yourself to make sure you’re receiving the care you would want. What’s more, knowing that you have your wishes in writing can reduce anxiety over the what-ifs.
For Your Loved Ones – Having a plan in place not only removes stress over what you would want, but it can also resolve any confusion or disagreement by making sure everyone is on the same page. This allows your family to focus on being in-the-moment with you.
AN UNEXPECTED BENEFIT OF ACP
You may not realize that advance care planning can also prevent undue financial burden for your family and/or estate. A study published in the Journal of the American Medical Association found that as far back as the early 1990s, patients who died following a documented ACP discussion accrued inpatient charges less than a third of those with no such end-of-life counseling.
ASK YOUR DOC FIRST
Now that you understand what advance care planning involves, the next question becomes: how do you begin the process? We recommend talking to your doctor first. Having a medical perspective and knowledge of your entire health picture is a crucial basis as you consider personal values, religious and spiritual priorities, as well as input from loved ones in creating a plan that best fits your needs and wishes.
HOW YOUR DOCTOR CAN HELP
By providing counseling and information regarding the likely evolution and outcome of your medical conditions.
By providing treatment and palliative care options.
As a continued resource should your condition(s) and/or treatment options evolve.
HAVING THE ACP DISCUSSION
Ideally, you would discuss advance care planning with your doctor when you have few, if any, health problems (proactive). However, it may also be triggered by a healthcare event (acute). Here’s how both scenarios might look:
A CLEAR PLAN FOR CARE
ACP provides everyone who cares for you a clear understanding of your wishes. Without this planning and documentation, hospital clinicians in particular are often left in an uncertain circumstance in which they have few alternatives but to treat with aggressive medical interventions.
TRANSLATING THE TERMINOLOGY
Not only does each state have its own ACP forms, the terminology also often differs from state to state. For example, a healthcare proxy may be called a durable power of attorney for healthcare or a medical power of attorney. In addition, the term living will is sometimes used interchangeably with advance directive. Clarifying what’s what in your state is another reason it can be helpful to Ask Your Doc.
CONSIDER WHAT MATTERS MOST
At this point you’re ready to think about what matters most to you at end-of-life. This is where your personal values and religious or spiritual preferences really come to the forefront. While it can be emotional to think these things through, again remind yourself of the benefits in making sure your wishes are known.
It’s often helpful to ask yourself questions to guide the process such as:
At end-of-life what matters most? For example, being able to recognize your family, being able to say goodbye, being free of pain, etc.
What scares you most about end-of-life?
How far do you want to go with medical treatment? For example, at what point do you want to shift from curative care to a focus on comfort and quality of life?
Are there types of treatment you would want (or not want)?
Where would you like to spend your final days? For example, a healthcare facility? At home?
How involved do you want your loved ones to be?
Is there anyone you do not want to be involved in your care?
Who would you like to make decisions on your behalf?
Do you prefer privacy or to be surrounded by loved ones?
How comfortable are you in sharing health information with your loved ones?
WHAT IF SCENARIOS
Our list of questions is not exhaustive, and for some, it may be easier to consider scenarios.
If a stroke left you mentally impaired and then your heart stops, would you want CPR?
If a car wreck left you paralyzed and unable to feed yourself, would you want a feeding tube?
If you were in a coma and couldn’t breathe on your own, would you want to be placed on a ventilator?
Should a new medical condition arise, do you want to receive treatment for that, even if the treatment will not help your terminal illness?
Your doctor may also have suggestions for additional points to consider.
CHOOSING A HEALTHCARE PROXY
Not only should this be someone you trust to advocate on your behalf; also consider:
Is he/she able to make decisions under pressure?
Will he/she be able to meet with your care team as needed?
Is he/she assertive and comfortable speaking up, asking questions and/or requesting second opinions?
Does he/she understand your personal and spiritual values?
HOW TO HAVE THE CONVERSATION WITH FAMILY
According to The Conversation Project’s 2018 National Survey, 92% of people say that talking with their loved ones about end-of-life care is important. But, 21% of people say they haven’t had the conversation because they don’t want to upset their loved ones. No doubt, this isn’t an easy conversation, but it is perhaps one of the most meaningful you’ll have with your family.
WHAT TO SAY (OR NOT TO SAY)
As you begin the discussion with your family put yourself in their shoes. Just as you don’t want to think about end-of-life, your loved ones don’t want to think about losing you either. So, have patience with them.
To the Person You’d Like as Your Agent: Once you’ve picked someone you trust, and who knows you well, talk to them openly about why you’ve chosen them as your healthcare proxy. To make sure they are comfortable in this role, be very clear and honest about your wishes and find out if they will support those wishes, even if they differ from their own.
To the Rest of the Family: Be open about ALL your wishes and let your loved ones know where you are coming from. Allow the conversation to flow naturally and answer questions honestly. It’s often helpful to approach the talk in a collaborative manner rather than dictating your decisions. This allows everyone to feel respected and heard. They may have input that you haven’t even considered, although the ultimate decisions are yours.
NOT JUST ONE CONVERSATION
Don’t feel like you have to cover everything at once. Think of this as the first of many conversations; ideally you should be able to have an ongoing, open dialogue with your loved ones as health needs evolve and/or circumstances change. What’s more, this can be a lot to digest! Some of your family members may need time to process and think in order for the discussion to be more productive.
THE SETTING IS IMPORTANT TOO
Where you talk can be just as important as the conversations. Pick a time that’s free of distractions or other stresses. For example, the holidays may not be the best time if tensions run high anyway. Also think about where you would feel the most comfortable talking – on a walk, the kitchen table or perhaps a favorite restaurant.
CONVERSATION STARTERS
Depending on your family dynamics you may want to prep everyone as to what you want to talk about ahead of time, or perhaps it’s best to call everyone together and go from there. Regardless, you might start things off with:
“I’m ok now, but I’d like to be prepared for tomorrow and would like your help.”
“I was thinking about [family member or friend’s] death and it made me realize…”
“I’ve been thinking about the future and would like to share my thoughts.”
“I’m worried about the future and would like to get a plan together to put my mind at ease.”
PUTTING YOUR PLAN INTO ACTION
Once you’re comfortable with your decisions, now it’s time to put your ACP into action. To do so, you’ll need to put your wishes in writing by completing advance directive documents. While these are legal documents, typically a lawyer is not needed, but there are things to keep in mind.
Getting the Forms
Each state has its own advance directive documents which you can find through this AARP resource. Or, when discussing ACP with your doctor, ask them to provide you with the healthcare proxy and living will documents for your state.
Completing the Forms
Again, state law differs as to whether your advance directives need to be notarized, and/or whether witness(es) will suffice. What’s more, there may be restrictions on who can be a witness. For example, your healthcare agent, family members or healthcare provider may not be allowed. Again, this is an area in which your doctor can help clarify what’s required in your state.
Sharing the Information
Once completed, keep the original documents in a safe, but accessible place. Then make copies to give to your healthcare agent, your loved ones, your doctor and perhaps even friends. The key is to be able to access your advance directives quickly in a time of crisis.
Updating the Forms
Advance directives are not set in stone. You can revise them as your preferences or circumstances change. Therefore, it’s important to review them if not yearly, then after major life changes such as retirement, a new diagnosis, divorce or if your spouse or healthcare agent passes away.
OTHER TYPES OF ADVANCE DIRECTIVE DOCUMENTS
We’ve discussed the two most comprehensive advance directives. However, there are other advance care planning documents that pertain to specific medical issues:
Do Not Resuscitate (DNR) Order – This tells medical staff in a hospital or healthcare facility that you do not want CPR or other life-support measures should your heart stop beating.
Do Not Intubate (DNI) Order – This tells medical staff in a hospital or healthcare facility that you do not want to be put on a breathing machine.
POLST (Physician’s Orders for Life-Sustaining Treatment) or POST (Physician Orders for Scope of Treatment) – These documents are often used when you are critically ill and know the specific decisions that might need to be made on your behalf. They may also be called MOLST (Medical Orders for Life-Sustaining Treatment) or MOST (Medical Orders for Scope of Treatment).
None of these advance directives are intended to replace a living will, however they provide guidance in the form of a physician’s orders signed by your doctor as well as you or your healthcare agent. The main benefit is that EMTs are required to honor these instructions in the states that legally recognize them if they are aware they exist. So place them prominently in your home.
COMMON QUESTIONS ABOUT ADVANCE CARE PLANNING
With a subject as complex as advance care planning, you’re still likely to have some questions. Here are answers to some of the most common ones.
Who can complete advance directives?
Any adult 18 years of age or older who is capable of making their own decisions can, and should, complete a healthcare proxy and living will
Why do I appoint only one agent to make decisions? What about the rest of my loved ones?
It is generally not advisable to name more than one person as your healthcare agent because if they disagree on a difficult decision your wishes may not be upheld. You should consider naming alternate agent however, in case your first choice becomes unable to fulfill the role
What’s the extent of the decisions my healthcare agent can make
Your healthcare agent is charged with ensuring that your medical care lines up with the wishes in your living will. In the absence of specific instructions, they can typically make decisions for you such as the use of life-sustaining or other medical treatments, access and release of medical records and organ donation based on what they think you would want. Restrictions on what a healthcare agent can do vary by state, however in general they cannot make decisions about your finances.
At what point will my healthcare agent make decisions for me?
Only once you lose the ability to make your own healthcare decisions, as determined by a physician.
Will another state honor my advance directives?
Yes, most states will honor an out-of-state advance directive. However, some may require that it conform to their laws. If there are multiple states in which you spend a considerable amount of time, you may consider completing the documents in each of those states.
What if I change my mind?
Simply complete a new document as your most current advance directive will guide the care plan if you are unable to speak for yourself. But make sure to notify and provide updated copies to everyone to avoid confusion.
ABOUT AFFIRMHEALTH
We founded AffirmHealth with the goal of helping front-line healthcare providers deliver better patient care through clinician-facing software that makes advance care planning simple.
Our ACP tool streamlines the process so providers can focus on patient care by:
Connecting directly through the patient chart
Identifying eligible patients
Documenting the discussion
Automating billing and quality reporting
The benefit to you? By removing barriers such as time constraints and outdated technology, AffirmHealth makes it easier for your doctor to serve as an advance care planning resource and to digitally manage your decisions across care settings for added convenience.
OUR MISSION
Help healthcare providers conduct advance care planning to improve patient care.