What's the difference between advance directives, living willins, and surrogate or proxy appointments?
The following is from the American Bar Association, Commission on Law and Aging: http://www.americanbar.org/content/dam/aba/migrated/Commissions/myths_fact_hc_ad.authcheckdam.pdf
Note that the American Bar Association has posted copies of each state’s form on its website — check it out while you’re there!
Advance Directives: Any document that gives instructions about your healthcare or gives instructions about who will make decisions for you if you can’t make them independently.
Living Wills: Documents telling physicians about what you want in life-sustaining medical treatment if you’re terminally ill, permanently unconscious, or in the end-stages of a potentially fatal illness.
Durable Power of Attorney for Healthcare (or Healthcare Surrogate or Healthcare Proxy, Agent, Representative, etc…): Documents in which you name another person or persons to make decisions for you if you are no longer able to guide your health care and treatment. Each state’s laws govern what healthcare representatives can do; unique names used in one state may differ in another. This often is a source of confusion.
Our course, Live UR Legacy: Be Prepared, provides an overview of practices in the state of Florida; it will discuss these types of documents and how they’re used.
I have no idea about how I begin learning all I'm required to know to represent my loved one. They go in for surgery next month, and we've not done anything! I'm scared, and they probably are too. Where do we begin?
As we do not know what the future will bring, we commend you for taking steps to prepare. Your loved one may already have a will, legal Power of Attorney, advanced directives or living will. We advise that you check in with your loved one and his attorney to clarify what you may need.
If you’re your loved one’s representative (surrogate, proxy, agent…), it’s important for you, as your loved one’s representative, to follow their instructions and desires for treatment. Learn as much as you can from them before their hospital admission. Our clients say this information helped them make decisions.
Also, without your loved one’s guidance, you stand a greater chance of falling into the statistic of representing the one in three decision-makers whose decision may result in severe consequences. One in three of decision-makers may suffer from PTSD-like symptoms for months, or even years, after the decision experience. Advanced preparation will help both you and your loved one.
To aid you, we offer a free fifteen-minute Decision Clarity C
There are my two brothers and I -- I know I'm the best at making decisions, but my brothers don't agree. How are we able to decide who's going to be the one who speaks for mom?
Your question suggests your mother hasn’t already selected one of you. Most adults choose someone they trust to guide their care. Parents of adult children often say they have difficulty choosing one of their adult children over another. We encourage the three of you to speak with your mother about this issue if possible.
Here are some things you and your family may want to consider:
Is the person who’ll be making decisions ethical and trustworthy? Will that decision-maker remember that their job is to adhere to the patient’s wishes, not override those with their own decisions? Being a patient surrogate is being a patient spokesperson.
Consider also naming an alternate decision-maker, someone who makes decisions if the primary surrogate (proxy, agent, representative…), for whatever reason, cannot perform their duties. These reasons can range anywhere from illness, prolonged absences or official assignments overseas, general fear, or simply not being able to make the decision.
Patients may decide to have several persons act together as one voice, using skills of each family member together. If this is the case, only one signature goes on consent forms.
Know that we have a tool to help with this too — it’s called the Healthcare Surrogate Preferences Scale (HSPS), Buckey & Abell, 2004; the three of you would answer about 20 questions on this scale to produce individual scores to the questions about what you can do (or what you may have trouble doing).
If your mother cannot decide, your score could be an objective tool for your mother to add into her evaluation of you as a candidate for representing her.
How do we learn about the different services that are available in our community?
An internet search is always a convenient place to start.
Most communities have a First Call service system, a one-stop shopping call center to help us find the right resources to help us with a problem.
All states have departments with specialties, such as seniors, or healthcare, or hospitals and nursing facilities.
Check our other community-based services, such as United Way, not-for-profit agencies, and churches, who can also refer you to a resource for help.
To get started, check our Resource Center contents. Also, our fifteen-minute Decision Clarity Consultation may be of help.
How can I be sure I'll know what to do when I have a decision to make?
None of us can ever truly know for certain what decision to make until the time arrives.
Here at URChoices, we believe in being prepared for the differences and distractions posed for families in the ICU. Remember, most families make important decisions around the kitchen table, not in, what some would call an “alien, cold” environment such as the ICU, where we must deal with a loved one’s serious illness as we accept that we are responsible for doing “what they would have wanted.”
Everything we’ve been told by others making ICU decisions, and this includes our own family experiences, supports our being as prepared as we can be for any decision we may be asked to make. As one client said, “know what mom wanted didn’t make my decisions any easier, but it did support me to get where I needed to go.”
If you need more help, begin by looking into the courses and services we’re currently offering in our course catalog, or get in touch and schedule a free fifteen-minute Decision Clarity Consultation.
What have other people done that worked for them?
First, we have to remember that all of our experiences are unique. Our patients, families, doctors, and facilities treating our families are all different.
However, when individuals have shared their experiences in our pieces of training and workshops, often, we hear themes, similar stories, problems, and events.
Our Family Corner contains videos of real decision-makers, family members who have “been there” making decisions in real-time. They hoped their experiences might help you.
In our store’s Live UR Legacy: Be Prepared video, the workshop begins and ends with group comments. Initially, the group shares common issues and concerns experienced. The workshop concludes with participants sharing what they learned from a role-play where the task of the “surrogate” was to learn what types of treatments their “patient” would want in the ICU.
Because 70 to 90 percent of all adults are likely to make health care decisions for another person, we encourage everyone to educate themselves about their patient, their duties, and the resources they will need should that likelihood become a reality.
If I take a course, how can I possibly remember all that I've learned?
We have a free, downloadable checklist that you can download from our homepage to get you started. If you become a URChoices client by participating in one of our course training, we provide a free, one-hour consultation when your patient is admitted to the ICU. “How to’s” for contacting us are located within course material.
If you have not taken our courses, but wish to become a client after your fifteen-minute Decision Clarity Consultation, we are available to work with you while your patient is hospitalized or receiving care. You may need to complete a contact form to let us know your immediate needs.
What's the difference between a healthcare surrogate and a healthcare proxy?
Our company is based in Florida, so we’ll start with the answer that pertains to our state: Florida law uses the term “surrogate” to identify the person who has been appointed by a future patient to act for them should they be unable to make their own healthcare decisions.
Any adult, 18 or over, asks another adult to represent them as their health care surrogate. If that person agrees and accepts that task, the two get clear on what types of care the patient wants. Once the surrogate accepts their role and affirms their ability to carry out the patient’s wishes, future patient and surrogate each sign their agreement, witnessed by two other persons. Both patient and surrogate keep a copy to later be presented at patient admission. Patients can designate an alternate surrogate as well.
In Florida, a patient does not appoint a proxy (there is not a signed document between them). A proxy is determined by their position in the hierarchy of patient relationships. First in priority is any court-appointed guardian. Then, it’s the patient’s spouse, adult child, adult sibling, adult relative, or finally, a close friend.
Every state has a different name for the person acting on the patient’s behalf. For example, a person called a health care surrogate in Florida would be called a proxy in New York.
If you have any questions about language, please consult your state statutes or legal advisor.
Is the healthcare surrogate financially responsible for the patient's care and treatment?
Most states permit naming a healthcare surrogate independently of the surrogate’s assuming any other patient responsibilities, financial or otherwise. It may be possible for a named surrogate to hold other powers on the patient’s behalf, such as a Durable Power of Attorney (
Can I speak with my patient's doctor if I am a healthcare surrogate in Florida?
Yes! If you’re the appointed health care surrogate, your patient may have allowed access to information and/or decisions jointly with them before incapacity. If your patient becomes incapacitated, you in technicality, become the patient. Your duties under Florida statute include the following.
1. You may make health care decisions during patient incapacity unless restricted by the patient or the courts.
2. You meet with and consult with healthcare providers treating your patient. Thus, you are entitled to receive the patient’s informed consent, a process in which physicians tell you the patient diagnosis/prognosis, any recommended treatments as well as the risks and benefits of each, and treatment recommendations for the patient.
3. You make decisions consistent with decisions you believe the patient would have made.
4. You sign written consents on forms as required, including a DNR.
5. You can access medical information, you transfer your patient and information to another facility, and release information on your patient’s behalf.
6. You can apply for public benefits, such as Medicare and Medicaid unless your authority is removed.
7. Florida’s Chapter 765 law changed as of October of 2015, which permits patients to share information and decisions with surrogates ahead of time, if they choose, or only to permit surrogates to act upon the patient in capacity, otherwise known as the default position. Take some time to review the additional duties.
What if I'm a caregiver? Is there anything here for me?
Caregivers are the unsung heroes of patient care in the United States. In fact, a recent study estimates for informal caregiving to our elders (care given by friends and family) is $522 billion each year, according to an October 2014 Rand Corporation study.
Having been a caregiver myself (this is Dr. Julie, here), know that the last survey I took tracked 17.5 hours per week of care given to my mother — and I was a fortunate daughter, as mom was still alert, walking, and relatively self-caring for her 84 years!
Caregiving is something caregivers do out of love or position (meaning, we’re the ones first in that line of potential caregivers, either because of our emotional or geographical proximity to our loved one.
Caregivers give proportionately to the patient’s needs. This means we see what our loved one needs, and, we give it. And we give when more is needed. And often, we’re unaware of our giving more and more because we just know it’s required. We’re the ones to do it.
When does caregiving become an issue? When we begin to “see” it or “feel” it in ourselves. How does it show up?
1. We may get sick (i.e. with the flu)
2. We may tire more quickly and wonder why we’re not recovering after a good night’s sleep.
3. We’re on edge more often.
4. Others notice and comment that we look “tired,” or we aren’t acting like ourselves.
So, if you’re a caregiver, please, be sensitive to your own care needs as well — try these tips:
If you provide care to another, and especially if you live in the same household:
1. If you’re faced with additional care tasks or must increase the amount of care to your patient, try to match your needs for rest with theirs.
2. If your family member goes to bed early, don’t stay up until midnight trying to do housework when you know they may wake up at 4:00 am and need you-you should turn in early as well. If your loved one takes an afternoon nap, try taking one as well.
Recharge the Batteries
Ask family and friends to relieve you for a few hours, or a day — go out, do something you enjoy, something fun! Go to the beach, to an art gallery, to get your nails done, to a sporting event; get a change of pace, a change of scenery. Attend to your needs, too.
Many community agencies, Hospice, Alzheimer’s and Parkinson’s Associations, to name a few, offer respite care for your loved one so that you can recoup and recharge. Take advantage of these options.
Don’t Feel Guilty Because You Ask for Help or Respite
Often, caregivers feel guilty because they tire, they ask for help or respite. Don’t! Asking for help is not a weakness. It’s because of our strength that you need it!
What does caregiving have to do with guiding my patient's healthcare as a surrogate?
Because MOST caregivers are also surrogates, they’re also the individual who enters the ICU with the most patient knowledge.
They can be the most help to the medical team because caring for the patient allows you to share what their general presentation has been, recently or historically. This can be very, very helpful to the medical team members, as you’ve been caring for their patient.
You are also the most fatigued, psychologically and physically. When we’re weary and stressed, we enter the ICU potentially impaired by physical and emotional stressors that may have been in place for days, months or even years.
And, that stress, that weariness, interferes with making the “best” decisions for our loved ones because of our fatigue. Although caregiver stress can increase because of hospitalization of your loved one, your own stress may diminish, as you head home for a night’s sleep, knowing your loved one is receiving professional care.