Did you know that fewer than 50% of Americans have a will, and even fewer have a Health Care Directive? In recognition of Health Care Decisions Day on April 16th, estate planning attorney Kim Literovich and Family Nurse Practitioner Susan Peller would like to offer a little insight on the importance of Health Care Directives.

An Anecdote:

When Susan Peller was a nurse in the ICU unit at Georgetown University, a gentleman was in their care for about six to eight weeks and had been unresponsive and on a ventilator during that time. Being on a ventilator is not comfortable, especially for long periods of time. Patients on ventilators are heavily sedated in order to help ease any discomfort, but having a machine breathe for you is unpleasant, which is clear to anyone who witnesses it. Unfortunately, the gentleman didn’t have anything written down regarding his wishes, and the burden of the choice of how to handle his end-of-life care fell on his family. The gentleman’s wife was unable to make the decision to remove the ventilator. Almost every day she would say, “Oh, I don’t think he would have wanted this,” but she could not bring herself to make the decision to have it removed. The children wanted the ventilator to be removed to end their father’s suffering. The dilemma went to the hospital’s ethics committee and he was eventually removed from life support. However, the result was heartache and pain that fractured the family.

What is a Health Care Directive?

If you are incapacitated and unable to express your wishes, a Health Care Directive (HCD) or Advance Directive, can help your health care providers and loved ones know what your wishes are when it comes to end-of-life medical treatment. The purpose of an HCD is to prevent a scenario in which your loved ones are left guessing as to what your wishes might be. The moment of an emotionally charged crisis is not the best time to ask  your loved ones to make difficult choices regarding your care. Further, those difficult decisions can lead to disagreements and can even fracture families. Instead, making your wishes clear through the use of an HCD can relieve your loved ones of the burden of having to make those decisions for you.  However, the most important thing is to have an honest, candid conversation with your loved ones, preferably all at once, about what is detailed in your HCD. HCDs do not serve their purpose if your loved ones and health care providers do not know what is in them, and explaining how and why your HCD includes the details it does can help mitigate disputes between loved ones in a moment of crisis.

What happens if I don’t have a Health Care Directive?

If you are incapacitated, medical providers turn to whomever the patient would deem next of kin for answers to end-of-life care questions, and that generally means the spouse. If there is no spouse, they turn to the children, and no one child has more say than another child. In situations where there are no family members it is very important to have an HCD giving medical directions and/or naming an agent.  The agent  could be a close friend, a cousin, a distant relative, or someone that has come into your life that has taken care of you. Health care providers cannot allow a non-family member to be in control of your health care decisions without clear direction from an HCD. That creates problems when someone has neither surviving family members nor an HCD.

What happens if my children don’t agree?

If you don’t have an HCD and your children do not agree on what the treatment measures should be, the child that advocates for the most care will prevail. Even if only one of several children advocate for more care, providers have to err on the side of caution. From the perspective of the health care providers, they cannot go back if they miss an opportunity to provide care, and for that reason, the person who advocates for the most care makes the decision. Health care providers will encourage family members to talk things over in those situations. A provider may sit down with the siblings with the understanding that the situation is stressful and ask that they talk to each other and try to come to an agreement. This is one of the reasons why it is so important to have an HCD in place prior to a crisis.

It is equally important that your loved ones are aware of what is in your HCD prior to a crisis. Even if an HCD is in place, if you become incapacitated and two of your children are in agreement to adhere to what is in your HCD and one of your children is not, the sibling that advocates for the most care will probably still prevail. It is important to remember that the HCD is a tool meant to help your loved ones and providers know what your wishes are. An HCD can be most helpful when it is used as a tool to get conversations going. These conversations are easy to avoid and can make people feel uncomfortable, but it is better to have an uncomfortable conversation when you are healthy than to have your loved ones burdened and unsure of what to do in a moment of crisis.

Are HCDs binding?

First of all, the legal statute is clear: as long as you have the ability to articulate and convey to medical providers what your wishes are, those are the wishes medical providers will follow.

If you are hesitant to put your wishes in writing for fear of missing out on potentially life-saving care, please know that every situation is considered by health care providers as a whole with input from your family and/or an agent. You do not need to feel like you are signing something away by creating an HCD. If, for example, you stated on your HCD that you don’t want to be on a ventilator, and you come down with a case of pneumonia and it’s very likely that you’ll recover, health care providers will provide the ventilator care that can save your life.

Further, HCDs can be changed at any time. HCDs serve as a guideline and are simply a way to get your wishes into a format that can be shared with those who need to know. When you have an HCD, it’s your HCD. You have the ability to change it whenever you want, and it can always be altered. The most important aspect of making changes is to be sure that the ones who would be by your bedside in a situation in which you are incapacitated know what you would want. It is also important to share your wishes with your health care provider. Communication is key.

What kind of format should my HCD take?

Minnesota statute has a suggested form, but does not require  a certain form that an HCD should take. An HCD must meet the following requirements: the HCD must (1) be in writing, (2) be dated, (3) state your name, (4) be signed when you have capacity, (5) contain verification of your signature, either by a notary public or 2 witness, and (6) include health care instructions, name an agent (health care power of attorney), or both.

There are a lot of forms out there: each clinic may have their own forms, the MSBA has a few options, and organizations like Five Wishes offer forms as well. Don’t be intimidated by lengthy forms. If you use a form, keep in mind that it does not need to be complete. If you are unsure about anything, you can leave it blank and wait to talk to your provider and loved ones. Even if you do not come to a decision, you may still leave it blank. Some information is better than none. Or, you can disregard all the forms and speak with an estate planning attorney to draft an HCD. Health care providers prefer documents that are in clear, plain language that is easy to understand. Also, HCDs that contain language in your own words can carry a lot of weight if there are any disputes. Regardless of what format you choose, make sure your loved ones and/or agent know your wishes.

What if I don’t know what I want in my HCD?

Not everyone has the medical knowledge and expertise of health care providers, and that’s okay. But, it is difficult to make decisions when you do not have all the information. When you go in for your routine health care visits, ask questions. Providers are more than happy to talk to their patients about what might go into an HCD, so do not be afraid to ask about specifics. You can ask your provider about different types of treatments, treatment side effects, and the level of success those treatments have in various situations so that you can make informed choices about your care.

Should I name an agent or should I just state my wishes in my HCD?

Either one or both is okay, and the choice is up to you. If you choose to only appoint an agent, make sure that you have had a frank conversation with them about your wishes so that they have all the information needed to make difficult decisions on your behalf. Regardless of what you decide, those conversations with either your agent and/or your loved ones are the most effective way to make sure your wishes are carried out.

I’ve got an HCD. What do I do with it?

If no one knows your HCD exists, it doesn’t serve its purpose. Make sure you give a copy to your named agent, your family members and your health care provider. If you choose to go through an attorney to draft your HCD, ask if they can fax a copy to your primary provider’s medical records department so that it can become a part of your medical records. It’s also a good idea to share it with the hospital so that if you end up in the emergency room or ICU, those providers also have access. There is no universal database of medical records, so providing a copy to the facilities where you may receive care in an emergency helps to keep everyone in the loop. Keep a copy in an accessible place in your home and tell your loved ones where it is and what is in it. You might consider keeping a copy in your glove compartment in your vehicle and a copy in your suitcase. The most important thing is to make sure people around you know how to get it and what is in it.

Make this year the year you take action.

An HCD is a gift to your loved ones—a gift of peace of mind. However, it only serves its purpose if everyone is aware of what is in it and where it is located. If you have questions about specifics, consider having a conversation with your health care provider. If you would like assistance in drafting an HCD that is tailored specifically to your needs, consider contacting an estate planning attorney. An HCD, if used as a discussion tool with your loved ones and medical providers, has the potential to decrease your loved ones’ heartache in an already trying time. In honor of this year’s Health Care Decisions Day, take control of your incapacity and end-of-life care plans, and give the gift of peace of mind to your loved ones.