When your loved one is incapacitated, who will make his or her decisions?

Who should make the decisions when this person can’t? The answer to this question could be any one of the following:
Person specified on the Advance Directive
Conservator or guardian
Spouse
Significant other/partner
Adult child of patient
Parent
Adult sibling
Relative
Friend
Family
Healthcare team
Administrator of the nursing home (in some states)

While this is a general list, the answer really depends on where you live, what the patient has specified and if the court has gotten involved. Each state calls the decision maker by a different name: surrogate decision maker, agent, proxy or durable power of attorney for healthcare. The laws that determine who should make the decisions also change state by state. For example, the administrator of a nursing home may be allowed to make the decisions in one state, but can’t in a different state.

Another rule that varies is the law that dictates a specific hierarchy of decision makers. A hierarchy means there is a legal order to who will be allowed to make the decisions for someone who has lost capacity. You may need to ask the social worker, the bioethics committee or the legal department at the hospital to help you figure out the appropriate laws in your state.

Here are some tips to consider when choosing your decision maker.
1. Pick someone who will understand what the doctor is saying.
2. Pick someone who knows you well and has listened to what you want.
3. Pick someone who won’t fall apart in a crisis.
4. Pick someone who will do what you have asked, even if it difficult to do.
5. Pick someone who is close by geographically.
6. Write down whom you don’t want to be involved in the decision making.
7. You can pick two or three people to work together as your decision makers.
8. Your spouse, significant other or partner may not be your best choice, and you may want to choose someone else.
9. In the “Other” section of the form, state whom you do and don’t want to be told your medical information.

Have a kind and respectful day.

Advance Directives Part 3 – Now that you have filled it out, what should you do next?

Now that you have filled it out, what should you do next?

1. Well, the first thing you have to do is sit down with your first choice and your alternate decision makers and discuss what you would want if you were injured, disabled or dying. Remember that this form goes into affect when you are too mentally disabled, unconscious or sedated to speak for yourself.

2. Then, you have to give all of your decision makers a copy of your advance directive. You also need to give copies to all of your doctors and your local hospital. You should keep a copy at home either by your bedside, taped to the inside of your medicine cabinet or on your refrigerator. You can also keep one in your car or in your purse. People won’t know what you want if they can’t find your instructions. Doctors get frustrated when the family says, “The patient has an advance directive, but we don’t know where it is.”

3. The next time you go to your doctor, bring him a copy and discuss what you have written with him. Ask him if he would be willing to respect your choices. This is where you can really get into trouble. Some doctors won’t follow what people have written in their advance directives, so you better know right now if he is one of those doctors. Also, some doctors are too afraid to talk about death. If you don’t think your doctor would not respect your wishes or if they are too uncomfortable talking about dying, then find yourself another doctor. I am serious about this. Doctors go against people’s instructions and prolong the suffering and dying of patients in every hospital. If you find yourself in this situation, with the doctor refusing to follow the advance directive, then the bioethics committee at your hospital should be able to help you. If you are the loved one and you are unwilling to follow what is written in the advance directive, then you shouldn’t be the decision maker. Have the doctors use one of the alternates.

How to get an advance directive and other resources.

1. The easiest way to get a free advance directive is to go to the front desk of any hospital. Just tell them you need one or more for your family and they should give them to you free.

2. You can go online to caringinfo.org for a free, state specific form. These are also free.

3. If you need one in a particular language, then do a google search with your state and language and see what comes up. Only a few languages are available, I am sorry to say.

4. Your doctor’s office should have one for you, but unfortunately, many doctors don’t keep them in their office.

5. You can also order one from Five Wishes. This is a very good document for explaining what you would want in certain situations. The document costs $5 each and can be ordered in bulk (25 copies or more are $1 each) at 888-5-WISHES or www.agingwithdignity.org. These forms are valid in 40 states including: Alaska, Arizona, Arkansas, California, Colorado, Connecticut, Delaware, The District of Columbia, Florida, Georgia, Hawaii, Idaho, Illinois, Iowa, Louisiana, Maine, Maryland, Massachusetts, Michigan, Minnesota, Mississippi, Missouri, Montana, Nebraska,
New Jersey, New Mexico, New York, North Carolina, North Dakota, Oklahoma Pennsylvania, Rhode Island, South Carolina, South Dakota, Tennessee, Vermont, Virginia, Washington, West Virginia, Wisconsin and Wyoming.

Quick Version for How To Fill Out Your Form:

Whom should you pick?
1. Pick someone who will understand what the doctor is saying.
2. Pick someone who knows you well and has listened to you tell them what you want.
3. Pick someone who won’t fall apart in a crisis.
4. Pick someone who will do what you have asked, even if it difficult to do.
5. Write down who you don’t want to be your decision maker.
6. You can pick two or three people to work together as your decision makers.
7. Your spouse may not be your best choice and you may want to choose someone else.

What would you want?
1. This form goes into effect when your brain isn’t working anymore, not just when you are dying.
2. Don’t be too specific about the particular treatments you want or don’t want because you don’t know what the medical situation will be when you need this form.
3. Write out a “Meaningful Recovery Statement” describing what kind of life you would want, if you were disabled and couldn’t think anymore.
4. Tell the doctors what they should do if you were going to live in a terrible condition as well as if you were dying.
5. Write down anything else you want them to know about where or how you want to die, organ donation preferences or autopsy instructions.

Have a kind and respectful day.

Advance Directives Part 2 – What would you want if you were unable to speak for yourself?

Next let’s look at how to tell the doctor what you would want, if you were unable to speak for yourself.

What would you want?

1. The first thing is to remember that this form goes into affect when you are too mentally disabled, unconscious or sedated to speak for yourself. This form will be used when you are injured, sick and/or when you are dying. Too many people, including doctors, think of this form as only a dying form. For some people, this form will be used for years when they have become mentally ill or disabled.

2. The next thing to decide is what you would want in certain medical situations. Should you be specific or vague about the specific medical treatments you would want? I would encourage you to be vague. You won’t know the exact medical situation you might find yourself in and you may have guessed wrong when you wrote down don’t do this or don’t do that. Here is an example: A patient might write on his or her advance directive that they never want to be put on a ventilator. How will this statement be interpreted by your doctors? The doctor will not put you on the ventilator because if he does, then it is considered assault and battery to give someone medical treatments against his will. This recently happened to an elderly gentleman. The gentleman wrote that he didn’t want to be hooked up to a ventilator, but what he meant was, he didn’t want to live on a ventilator. This became a problem when he needed to be hooked up to a ventilator for 4 days in order to recover from an infection. He didn’t need it forever, just for a few short days. But because he was too specific, the doctor couldn’t save him. So be careful when you request certain medical choices. Make sure that what you have written would work in all situations.

3. So, now that I just scared you, you are probably worried about what to write in this section. I have a solution. It is called a “Meaningful Recovery Statement.” You need to explain to the doctor, “What kind of life would you want to live if your mind no longer worked well or if it didn’t work at all?” Now for some people, any condition is okay as it is God’s will to determine how we live and when we die. But for others, you can’t think of anything worse than living in a nursing home, wearing diapers, having other people feed you and not being able to recognize your loved ones. But how will your doctors know what you want if you don’t tell them? Doctors know how to practice medicine. But what they don’t know is what would make for a “meaningful recovery” for you. So you have to tell them.

Here is my “Meaningful Recovery Statement”:
“I value a full life more than a long life. If I have lost the ability to interact with others and have no reasonable chance of regaining this ability or if my suffering is intense and irreversible, even though I have no terminal illness, I do not want to have my life prolonged. I would not then ask to be subjected to surgery or to resuscitation procedures, to intensive care services, or to other life-prolonging measures, including the administration of antibiotics, blood products or artificial nutrition and hydration. I also believe that the financial and emotional burden on my family should be considered in making these types of decisions.”

Because I have written this in my advance directive, the doctors will know what is important to me. Of course this doesn’t have to be your statement. Write one that is meaningful to you and attach it to or write it on your advance directive.

One more thing, please address the issue of terminal versus non-terminal situations. If you are terminal, then it is important your doctors know where and how you would want to die. If you are only severely disabled, but not going to die soon, then you need to let them know what kind of life would be tolerable for you. The best way to be protected is to write it down.

We have just gone over the main sections. Of course you can write down anything else you want the doctor to know about you. You might want to tell them where or how you would want to die, if you would like to donate your organs or if you are for or against an autopsy. This is your form, so write down whatever works for you.

Have a kind and respectful day.

Advance Directives Part 1 – Choosing your decision maker

Most doctors just hand the patient this form and say fill it out. But they don’t help you fill it out or explain what the decisions mean. I am going to help you think through the process of filling out your Advance Directive.

There are two main decisions you need to make when you are filling out your Advance Directive. Who you want to make your decisions for you and what you would want. After I help you with these two questions, I will then tell you what to do with your advance directive after you have filled it out. At the end, I have included instructions on how to find a form that would work in your state.

Let’s first talk about who you would want to make decisions for you. In your state, your form might ask you to list your agent, proxy or surrogate decision maker. (These words all mean the same thing, but each state its own legal term.)

Who should you pick?

1. You should pick someone who is medically literate. What does this mean? The person should be able to understand what the doctor is saying, be able to figure out the medical words and be able to understand the medical choices being offered. If the person you thought you were going to pick would be confused by what the doctor would say, then pick someone else.

2. You should pick someone that knows you very well, would know what you would want in a medical crisis and would tell the doctor what you have told them in the past. The person you have chosen will be asked to listen to the medical information and then use your values to make the medical decisions. The person is not supposed to use his or her own values, but to speak as if they were you. If the person you thought you would pick wouldn’t respect your choices or has very different beliefs from yours, then pick someone else. You want someone who will speak as if he or she is speaking with your voice, not his or her own agenda.

3. You should pick someone that won’t fall apart in a crisis. It doesn’t do you any good if the person is hysterical, can’t function or can’t stand to visit you in the hospital. You need to pick someone brave enough and who will be by your side no matter how difficult things get. If the person you thought you would pick doesn’t handle his or her own life very well, then don’t have him or her be in charge of yours.

4. You should pick someone that will do right by you even if it is the most difficult thing they ever had to do. Sometimes doing the right thing is allowing the person you love to have a peaceful death. And your decision maker needs to be able to live with the difficult decisions he or she has to make. In reality, he or she is making the decisions based on what you would want, not what he or she would want. But that doesn’t make it any easier. You have to be able to talk to this person ahead of time about what you would want in different kinds of situations. So, if the person you thought you would pick is too afraid to talk about death and dying, then he or she isn’t the right person for this job. And if he or she would refuse to follow through with what you have requested, then pick someone else.

5. You can write down whom you don’t want to be your decision maker. Depending on what state you live in, the rules vary regarding who is in charge of you when you are unconscious or incapacitated. You need to protect yourself.

6. Doctors won’t tell you this but you can pick two or three people to share in your medical decision making. But be careful that you pick people who can work together, will support each other and who you know won’t make things worse for the healthcare team. I had one lady tell me that she picked her two sons to make her decisions and that these two men had never agreed on anything. She is setting herself up for a nightmare as good decisions won’t get made and the doctor will hate having to deal with her sons. You don’t want your doctor to hate your decision maker. Please pick carefully.

7. Some people don’t pick their spouse because they know that it would be too much for their loved one to go through and that their spouse couldn’t make these most difficult decisions. If you do pick your spouse, then you need to be extremely careful about picking the alternate decision makers. The alternates will make your decisions if you and your spouse are injured in the same accident. The alternate should be just as qualified as your first choice.

I am available to speak at your organization or hospital.

Have a kind and respectful day.