Thursday, July 12 at 12PM PDT, 3PM EDT.
It is important that you have a voice in your life and health decisions even if you have a cognitive impairment. Who will speak for you if you are sick or injured? What should this person tell the doctor? What else do people need to know to make sure you get the care you need and deserve? Listen in and get your questions answered.
Have a kind and respectful day.
For the record, I am a fan of lawyers and am incredibly grateful for all the ways they take care of us and protect us.
When someone wants to document their wishes in an advance directive, living will or durable power of attorney, the person who will be signing the form must have the ability to think for themselves. This is called decisional capacity or competency. Although a person doesn’t need to use a lawyer for these forms many people do. When someone brings in a form, which was completed by a lawyer, healthcare professionals assume that the lawyer made sure that the person had the capacity to think before allowing them to sign the form.
I don’t know if other people are aware of this issue but it has been recently brought to my attention that there is an industry practice within elder law community where lawyers are writing advance directives for people without capacity. They work with the family to determine what the person would have said, then proceed to have the person, who has limited or no capacity, sign the advance directive. (Not every attorney does this, but many do. There are many fine lawyers out there who are protecting the public.)
Their justification is that it is actually protecting the family from having to go to court to establish conservatorship later on. Their intentions are good, but their practice is illegal. When I brought this to some elder law lawyer’s attention, they had no defense. And when I explained that it now brought doubt to the validity of all legally prepared advance directives, I only got blank stares.
I have asked around and this is not an isolated incident. It makes me now question if I can even believe a lawyer prepared document that the family brings in. As an ethicist and healthcare professional, I am asking those of you who work in the industry to make sure you are only having those who understand what they are signing, sign their documents. The skilled nursing home community has a legal protection in place by mandating that an outside ombudsman witness the signing of legal documents to make sure those with disabilities aren’t being taken advantage of. I would hate to see the legal community need to have a similar watchdog in place. I need all of you to do the right thing so I can then use these documents to advocate appropriately when these individuals are in my hospitals.
Have a kind and respectful day.
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.
Addendum: Comment from Thaddeus Pope. HR 2705 bill before the House of Representative is unnecessary and may be dangerous when it comes to Advance Healthcare Directives.
**Addendum added on June 29, 2009. Thank you Thaddeus Pope, from medicalfutility.blogspot.com. He reminded me that the part of the advance directive that states “who” should be the decision maker may not be a problem for the doctor if it is written by a lawyer. The “what you want” section is the part we should be worried about. Thanks, Thaddeus.
The HR 2705 bill before the House of Representative would give a tax break to someone using a lawyer to complete their advance directive. While at first glance, I love it that the government is considering ways to make sure people have advance directives but there is a hidden danger. The danger is that doctors hate it when people have advance directives written by lawyers. The documents tend to be long and difficult to understand. When you are in the emergency room, you want to have a standard form that the doctors can read quickly and put to use. Not only will the lawyer’s advance directive annoy and confuse the doctor, it may not be read until much later after your life and death decisions were made without your input. That is not what you want. The whole point to the advance directive process is to make sure your voice is heard when it needs to be. What doctors would prefer is for you to use the standard forms found in your state. (see my resource page for one for your state)
Also, you should never have to pay anything for an advance directive. You can get a free one online or get one at the admitting desk of your hospital. Then you can have it signed by witnesses and you don’t need a notary. Just make sure the people witnessing follow the instructions on the form. Usually the witness can not be someone you are assigning to make your decisions for you or somebody in your will. Make sure you read your form carefully.
Please tell your representative to not vote for this bill. Nothing against lawyers. I believe that are definitely times that we should use lawyers. But this is not one of them.
Have a kind and respectful day.