We take for granted that we have the right to make decisions about our own health care. You cannot be forced to accept or reject medical treatments. But what happens if you cannot communicate your wishes because you are incapacitated? Can you still retain control over your medical destiny? Fortunately, the answer is yes – by establishing health care advance directives.
The Covid pandemic has awakened many of us to the reality that our health status can change in an instant, and some treatments – prolonged artificial ventilation, say – may not be what we would would desire. With the realities of the pandemic in mind, and with National Health Care Decisions Day approaching on April 16, this is a fitting time to think about creating your advance directives, and reviewing the ones you may already have to make sure they still serve your needs.
What Are Advance Directives?
Advance directives are formal, written documents outlining the kinds of medical treatments you would accept or reject. Equally importantly, they allow you to designate a surrogate, the person (s) you want to make your health care decisions if you cannot communicate them yourself. It is essential to have a surrogate who can evaluate your circumstances and make decisions in accordance with your general wishes, because no document can address every detail of every medical circumstance you could experience.
You are not required to have Advance Directives. But without them, you could be handing over your important health decisions to someone you may not trust, or even know. Here’s a real-life example: A college student, 20, contracted meningitis and was comatose. He had not designated a surrogate. Like many young people, he didn’t think he needed one. Under Florida law, the job of managing his care fell to his parents: to the mother who had raised him, but also, unfortunately, to his father who had abandoned the family and never even met his son. Another ironic aspect of this case is that this young man’s sister, a physician, would have been the perfect surrogate for him.
Peace of Mind For You And For Your Family
Advance directives provide you with peace of mind for the future. They provide your family with peace of mind, too, by assuring them that they are honoring your wishes. Advance directives also lessen the chance that family members will squabble over what’s best for you.
Who Should Be Your Decision Maker?
First, make sure the person is willing to do the job! It can be an emotionally taxing one. Second, give priority to someone who knows your values and desires. If their views are different from yours, they must be willing to make decisions based on your views, not theirs. Take the situation of one elderly woman who was in a vegetative, terminal state. Her living will indicated that if she was ever in that condition, she wanted food, hydration and artificial ventilation to be withheld. But her decision maker, her son, had religious beliefs that prohibited removal of life supports. He never furnished the hospital with her living will. His mother died weeks later, but not on the terms that she wanted.
Advance directives must be created while you are of sound mind. Too many people wait until serious illness strikes. If you keep putting off your planning, you may find you’ve waited too long. The Covid pandemic illustrates how quickly the unthinkable can occur. As Eno Banach, CEO of the National Hospice and Palliative Care Organization, says: “Far too many Americans put off talking about their health care wishes and then they find themselves in a medical crisis and it may be too late to ensure that you get the care you want.”
If you haven’t yet set up your advance directives, they can and should be done when you address your estate planning. At the Karp Law Firm, the creation of advance directives and discussion of potential incapacity are part and parcel of our estate planning services.
Types Of Advance Directives
There are several types of advance directives. Each applies to a different type of circumstance. The purpose of all these documents is to ensure you get the kind of medical care you want, and avoid the kind you don’t want, should a situation arise in which you cannot express your wishes.
Health Care Surrogate: Give Someone Else The Power To Make Your Decisions
This is a formal document authorizing another person to make your health care decisions if you are not capable of giving informed consent. Your incapacity may not be permanent. For example, you could be under anesthesia in surgery, and your surgeons require a decision about how to proceed.
Co-surrogates are not permitted: Under Florida law, you may only have one surrogate at a time. You may name backup surrogates in case your first choice is unable to serve, but you may not appoint co-surrogates. This is to avoid conflicts and delays from arising when physicians require a decision to be made, often quickly.
Your health care surrogate should include a HIPAA release. The Health Insurance Protection and Privacy Act protects your medical information. The HIPAA release can be incorporated into your surrogate form, or be it can be a separate form. It authorizes medical providers to give your information to your surrogate. Medical providers include not just physicians – they can also include pharmacies, insurers, physical therapists, etc. Also, your HIPAA release can allow others, not just your surrogate, to get your medical information. For example, your wife may be your surrogate, but you may want to be sure that your hospital or insurance company will release information to your adult daughter, too.
What happens if you fail to appoint a surrogate? In that case, Florida law takes over, and a proxy will be named for you, in descending order:
- Judicially appointed guardian
- Adult child, or if more than one, a majority of the adult children who are reasonably available for consultation
- Adult sibling, or if more than one, a majority of the adult siblings reasonably available for consultation
- Adult relative who has exhibited special care and concern for the patient, has maintained regular contact with the patient, and is generally familiar with the patient’s activities, health, and religious or moral beliefs
- Close friend
- Under specific circumstances, a clinical social worker
A living will directs your health care providers to not prolong the dying process in the event you are in a terminal or end stage condition or persistent vegetative state. Florida law has rules for how living wills must be executed and witnessed. One of the witnesses may not be a blood relative or spouse of the maker, or the document will not be valid.
Avoid pre-printed living wills. Many use vague terms like “avoid heroic measures.” But just what does heroic measures mean? Without specificity, you’re leaving it up to others to interpret what you meant and wanted.
Do not confuse a living will with a living trust. They are different documents and perform different functions for you.
Do Not Resuscitate Order
The DNRO is an instruction signed by the doctor and the patient, or the patient’s medical surrogate, directing emergency personnel to withhold CPR (cardio pulmonary resuscitation). It must be signed by you or your legal surrogate, and by your doctor. The State of Florida has a specific DNRO form that may be downloaded and printed. It must be printed on yellow paper. It is typically used when a patient is in a terminal condition or vegetative state, but not necessarily: For example, we know of a case of a perfectly healthy woman in her late 90s who still plays golf and tennis regularly. She says she has lived a wonderful, full life and if her “time is up,” she doesn’t want to be resuscitated to live in a potentially compromised condition. Keep in mind too that CPR, although it sounds benign enough, will often break ribs and do other physical damage to an elderly person. Even if the person is resuscitated, CPR may have created more physical problems and pain.
The DNRO should always be kept on prominent display at home or in the hospital. There is also a section that can be detached, laminated and put in your wallet or worn around your neck. This is important so that emergency medical staff will see it immediately. If emergency medical technicians do not see a DNRO, they are legally bound to resuscitate.
Remember, the DNRO must be signed by a doctor, in addition to patient or surrogate.
Can you change or revoke your health care surrogate, living will, or DNRO?
Yes, you make change or revoke these documents at any time, so long as you are competent. You should also review these documents periodically. We have seen cases where someone has a very old health care surrogate that designates a spouse who has been deceased for years – and names no backups. That is effectively the same as having no health care surrogate at all!
Doesn’t a will take care of planning for incapacity?
No. Your will indicates who you wish to handle your estate and who you wish to receive certain assets when you pass away. It has no relationship to your health care while you are alive.
Do I need to discuss my advance directives with my loved ones and designated decision makers?
Yes! During the conversation you can clarify your wishes. This will also put your family more at ease if they are ever called on to make decisions for you. The Conversation Project has suggestions about how to get the conversation going and the points you may wish to discuss.
Where should I keep my health care documents?
Furnish your decision-makers and physicians with copies of your documents. The originals should be kept safe, but in a place that is readily accessible when needed. They do not belong in a safe deposit box! If you have a DNRO and you are living at home, it should be taped to the refrigerator, displayed by your bed or worn around your neck. As mentioned before, emergency medical technicians are legally bound to resuscitate unless they can verify that you have a valid DNRO.
If I go into the hospital, they will provide me with a living will form. Is this adequate?
It may not be adequate. The hospital’s form will only cover whether you desire to terminate the dying process. It will provide no direction or clarity on your wishes for other health care, nor will it designate who your decision maker is if other health care choices must be made for you.
My parents refuse to discuss their health care planning with me. In fact, I don’t think they’ve done any. What should I do?
This is a common problem. After all, your parents are used to taking care of others. The role reversal can be discomforting for them. Do not try to “take over” or tell them what is best for them. One possibility is letting them know that you want to help them if they ever need help, and you need their guidance so you will know what to do. It can also be an icebreaker to ask them what they think of people in the news facing their own health issues. For example, if a celebrity is injured or hospitalized, what do they think would be the best course of action for that individual? What would they do under those circumstances? You can try to enlist help from others your parents respect – other children, relatives, clergy, medical professionals and other professionals. Another good lead-in is letting them know that you have established your own advance directives or are interested in doing so, and why.