I think you should talk about your medical and end-of-life wishes when you are with your family at Thanksgiving. (Why does everyone laugh when I say this?) I am absolutely serious. It is a great time to talk as a group about what is important to you and how you would want to be cared for if you were seriously ill. The up side of talking as a group is that it takes the pressure off of the seniors in the family who would like to talk about their wishes but don’t know how to bring it up. It also takes the pressure off of the family members who want to talk to the elders in their family but don’t know how to bring it up.
A great way to begin the conversation is to use the Go Wish Cards. www.gowish.org
Look at this game on-line before you head over to the family and then use it as a starting place for your conversations. Or use my new advance directive quality-of-life statement as a tool to talk about what is important to you. You can find this at: http://kindethics.com/2012/11/my-new-quality-of-life-statement-to-attach-to-my-advance-directive/ You may also want to print out my Insider’s Guide to Filling Out Your Advance Directive which you can download at: http://thecaregiverspath.com/assets/pdf%27s/Insider%27s%20Guide%20-%20Viki%20Kind.pdf
The main thing is to make the conversation safe and fun. Yes I said fun. When I talked to my husband’s family about advance care planning, they got into the spirit of it and began arguing over which adult child was going to pull their dad’s plug when the time came. Of course this was a joke and represented the funny way his family communicates. As the conversation progressed, people were surprised by what the different family members wanted to write down in their advance directive. I tell you this because these can be interesting and insightful conversations. You may think you know your loved ones but you will be surprised by what they may tell you is important to them.
Ideally, bring a copy of your state’s advance directive for each member of the family. Feel free to forward them my quality-of-life statement and the instructions from my website.
This may be the most important holiday present you give and get this year.
Have a kind and respectful day.
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.
The goal of writing a quality-of-life statement is to have it express your personal preferences and to have it sound like you. One of the problems with many of the legal/medical forms is that they all sound alike and they don’t allow your voice to be heard. I encourage you to use the categories I have listed below to express what you would want people to know about you if you were too sick to speak for yourself. You can use some of my language from my document below if you would like but my goal is for you to make it personal and meaningful to you. You will know you have gotten it right if people say to you, “Yes, this is sounds like what he/she would say.” By making it feel personal, you will help your family/friends feel more confident that they are truly honoring your wishes.
Sections of QOL Statement to Consider Including in Your Directive:
? Types of illnesses where this advance directive would apply.
? What is important to me?
? What conditions would I find reprehensible to live with long term?
? CPR, ventilator and feeding tube preferences.
? Reassurances for the decision maker.
? What is a good death in my opinion?
? What I want the doctors know about honoring my religious/cultural beliefs both while I am sick and/or dying?
Here is my new quality-of-life or meaningful recovery statement. My wishes haven’t changed but how I am saying it is much more complete. Feel free to take any part of it you would like. Use the basic headings and then make it personal and meaningful for you. I would recommend attaching it as an addendum to a basic advance directive form that works in your state.
Advance Healthcare Directive for Viki Kind – dated 11/1/2012
Types of illnesses where this advance directive would apply whether I am terminal or not terminal.
I can never list every type of disease that might make me begin to lose my mental capacity but the list might include, but not be limited to: all types of dementias, stroke, brain injury, mental illness, anoxic event, etc. I don’t have to be completely out of it like being in a coma, persistent vegetative state, or minimally conscious state for this document to go into affect. And I don’t have to be terminal. The point is that I don’t want to have my life prolonged/sustained if my brain no longer works well enough to enjoy what is important to me.
What is important to me? (The loss of any of these might be enough for my decision maker to implement my wishes documented in this advance directive.)
To make a difference in the world.
To be able to communicate with those I love.
To receive the joy that comes from personal relationships.
To have some independence.
To be able to give love, not just receive people’s kindness.
To not be a burden on my family/friends – financially, emotionally or physically.
To have a good death as defined by me (see below).
What conditions would I find reprehensible to live with long term? (Please give me the chance to recover if recovery is possible, but if I am not recovering to a level of functioning that I would think is worthwhile, whether terminal or not, then choose comfort care and hospice which I understand will lead to my death.)
All of the following conditions do not have to be present at the same time for the decision to be made to allow me to die from my illness/injury. Any one of these conditions may be sufficient enough to change my course of treatment from prolonging my life to comfort care and allowing a natural death.
This list of “Conditions I would not want to live with” includes but is not limited to:
Not recognizing my loved ones.
Not being able to communicate by voice, computer or sign language.
Wandering around aimlessly.
Suffering that isn’t necessarily pain related.
Significant pain that can not be controlled.
Significant pain that requires so much medicine that I am sleeping all the time.
Having to live in a skilled nursing facility or sub-acute facility permanently with my cognitive impairment. Nursing homes create such sadness in me every time have I visited or have stayed overnight with a loved one. I am too empathetic and take in people’s suffering too easily to be in that environment. It would destroy me long term. A short-term stay in a SNF/rehab/sub-acute is okay if I can recover to a life that I would consider worth living. (I understand that with certain types of traumatic brain injuries, they take a longer period of time to evaluate whether or not recovery is possible.) But if it looks like I am not recovering, then no thank you.
Okay, now the CPR, ventilator and feeding tube conversation.
My overall guideline is that if CPR, ventilator support or a feeding tube/TPN can return me to what I would consider to be a meaningful existence, (what is important to me), then please give me CPR, ventilator support and/or a feeding tube/TPN. But there has to be value in these medical options and any other medical treatment choices that are being considered. Don’t do things, including but not limited to, antibiotics, etc., that are just to sustain my poor condition.
I am not opposed to living with a feeding tube/TPN if it gives me many years of being able to enjoy what is important to me. But if the feeding tube/TPN is just to sustain my miserable condition, (what I would consider reprehensible) then don’t put it in or give me feedings through it; and please take the feeding tube out if it is already in. (Okay, if I am on hospice and the feeding tube gives you access for administering the pain and suffering meds I need, then you can leave it in. But don’t put food or additional liquids in it.) The feeding tube, like all medical decisions, needs to create value in my life, not just sustain my life.
If I am still healthy and can still experience lots of the things that are important to me, then give me CPR. But as my health declines and CPR becomes less statistically successful, then make me a DNR. Just like many doctors, I don’t want to die by CPR. I want to die peacefully without life-prolonging medical interventions. (Doctor, please ask yourself the surprise question: Would I be surprised if Viki died during this hospitalization or died in the next 6 months? If the answer is “No, I wouldn’t be surprised,” then talk to my decision maker about end-of-life choices, including putting me on hospice.)
Reassurances for the decision maker
You are allowed to make the best decisions you can based on the circumstances and what you know at the time. You do not need to know for certain or absolutely that you have all the answers. The decision doesn’t have to be perfect. Use your heart and your head. I trust you to do the best you can. (Ed, you don’t have to go into super-perfectionist mode.)
I believe love does not obligate a person to sacrifice themselves to be the caregiver for another. The damage done to the caregiver, emotionally, physically and mentally is too costly. I do not expect someone to give up their mental, emotional and physical health for me. Look at the MetLife studies. Caregiving sucks. And I love my decision maker and alternates too much to impose such a burden on them.
(Ed, if you need some time to make peace with what has happened, then you can take the time you need. I don’t want the decision to feel rushed or uninformed, which would cause you a lifetime of regret.)
For you doctor, your role is to give my decision maker as much information as you can so he/she can make an informed decision. I encourage you to share your wisdom, guidance and experience but ultimately, it is my decision as expressed through my decision maker and this document. Remember, this document is an act of autonomy and should not be ignored by my decision maker/s, other family members, doctors or worst case, the courts. (I will definitely come back and haunt a judge who isn’t respecting my wishes.)
What is a good death in my opinion?
I would prefer to die at home but I realize that sometimes, a person needs to die somewhere else so I accept that. I would like to have my family/friends with me which includes and is limited to those I interact with on a regular basis. Those family/friends who have chosen to not be in my life while I was living should certainly not be there as I am dying. Because I like control over my life, I would like to be able to clean up my desk and to get my financial information updated. I would like to be able to write love letters, record messages and to say my goodbyes. (I will do my Go Wish Cards and leave a copy for my family.)
I would like to die with reasonable pain control. For the days leading up to the death, I would be willing to tolerate a certain amount of pain if that allowed me to have meaningful time with family/friends. But at the end, there had better be no pain and definitely, no air hunger. (That doesn’t mean ventilator support; it means manage my air hunger with medications.)
And you better not be force feeding me by mouth, by IV or by tube as that would increase my suffering. (And that includes you at the skilled nursing facility, sub-acute facility or other care community if I happen to be dying there. I know you have your regulations but I also know you can’t assault someone with food if they have said no when they had capacity.)
That’s it for now.
Viki Kind ________________________________
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.
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.
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.
If you read Monday’s blog you will know that medicine can be corrupt and the best defense you can have is to put your wishes in writing. So, what should you be doing today?
1. Talk to your loved ones about what you would want if you were going to live in a terrible condition. And talk to your loved ones about what you want if you were dying. Not just the medical choices but where and how you would want to die and what else might make it a good death for you.
2. Tell your doctors about all of these wishes as well.
3. Fill out your advance directive for healthcare decisions. Go to my resource page to download an advance directive. Print out copies for everyone you care about.
4. Give copies of your completed form to your loved ones and all of your doctors and your local hospital. Keep a note in your wallet stating the phone numbers of your decision makers and where your advance directive is kept. It should be kept on your refrigerator, in your medicine cabinet or at your bedside.
5. Be comforted in knowing that you have taken care of things so it won’t be a burden on your family. It is a gift to them to make sure they aren’t burdened by having to make these difficult decisions for you.
6. If you need help, please contact me at firstname.lastname@example.org.
Have a kind and respectful day.
Got a question? Ask Viki. <!–coldform–>