My New Quality-of-Life Statement to Attach to My Advance Directive

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 ________________________________

Date: 11/1/12

Making Difficult Life & Medical Decisions presentation at the FSGA Annual Conference 7/17/10

Viki will be giving a presentation at the Florida State Guardianship Association’s (FSGA) Annual Conference on 4 Tools for Making Difficult Life and Medical Decisions on 7/17/10 at 10:50am.

FSGA is a nonprofit corporation founded in 1983 for the improvement of guardianship services. Governed by a Board of Directors representing five geographical areas of the State, FSGA is dedicated to promoting the protection, dignity, and value of incapacitated persons through ethics, advocacy, and the dissemination of information.

FSGA’s mission also includes a focus on furthering the professionalization of guardians as accountable court representatives through education, networking, and legislative action.

Guardianship is the management of the affairs of someone who has been judged unable to manage their own affairs. Generally guardianship is ordered by a court on behalf of someone who is called a ward of the court. A guardian assumes the rights of the ward to make decisions about many aspects of daily life. A guardian is directed by ethics and statute to make decisions in the best interest of the ward.

FSGA members include professional private guardians, corporate guardians and fiduciaries, attorneys, social workers, care managers, government agency and court staff and others interested in the support and advancement of guardianship services and alternative protective services.

Have a kind and respectful day.

The medical decision is just part of life’s equation.

So many people ask me what they should be thinking about when making medical decisions. Whether you are making your own decisions or having to make decisions for others, there is a lot to think about.

Your doctor or your loved one’s doctor will talk to you about the medical aspects of any health-related decision. But that doesn’t mean that you are limited to thinking only about medicine. It may be important to consider the financial costs associated with the treatment plan, if the patient’s religion should play a role in the decision and whether there are cultural issues that come into play. Think about the overall picture of your loved one’s life. In The Caregiver’s Path to Compassionate Decision Making, I offer lists of questions to help you understand the whole picture.

It would be nice for the decision to be as simple as asking, “Will the treatment work and what are the side effects?” But life isn’t that simple. What if you were about to make a medical decision that allowed something to be done to the person’s body that was forbidden by the person’s culture or religion? You might have chosen a certain treatment to save her life, but because the patient received that treatment, she will no longer be able to move on to the hereafter. Yes, the medical decision was a good one, but how the decision will affect the person’s life, based on her personal belief system, was not.

If the person you are making decisions for is very religious, then it would be good to find out if there are any religious rules or values that you should consider in your decision making. I know that when I work with my hospice patients, it is important to know if there are certain rites or blessings that have to be performed before the patient’s death. I don’t have to agree with what the person wants, but if I am the caregiver, then I need to do what I can to make sure the person’s religion or culture is respected. I will need to call in the appropriate religious leader to take care of the spiritual needs of this person. If the person is not religious or spiritual, then you will need to respect this and leave religion out of the decision making process.

For most people, the financial costs of the medical treatment will need to be considered or you may be putting the person in financial danger. You may be in charge of making only the healthcare decisions, but you should make sure that you or somebody else checks with the insurance company to find out whether or not it will pay for the treatment and to get the proper authorizations. Don’t let a simple mistake like forgetting to call the insurance company to let them know that your loved one was admitted to the hospital put your loved one in financial distress. Making decisions without using the financial questions could bankrupt your loved one. Our goal of protecting the person should include protecting his or her wallet.

For a list of questions you can use when making decisions, go to the resource page and download the list from the excerpts from The Caregiver’s Path to Compassionate Decision Making – Making Choices for Those Who Can’t.

Have a kind and respectful day.

Patient’s Rights – Where do they start and where to they end?

What are our obligations to the patient? Keep in mind that autonomy only works with people who have the capacity to make their own decisions.

Here are some of the patients’ rights that come with using autonomy:
• Patients have the right to receive all the information they need to make a good decision.
• Patients have the right to make their own decisions.
• Patients have the right to refuse treatments they do not want.
• Patients do not have the right to demand treatments that will be medically ineffective or are medically inappropriate for their condition.

It is important to realize that there are limits to a patient’s rights. A patient is limited to asking only for treatments that will benefit her. This limitation makes sense. It would be pointless, and potentially harmful, to provide a treatment or medication that would not improve the patient’s condition. So, as a physician, you are able to say no to practicing bad medicine. If what the patient or decision maker is requesting would be inappropriate or non-beneficial you can say no and protect the patient. But if it is a medically valid option, even when you disagree with what the person wants because you think they are being foolish or it isn’t the best option to choose, we have to respect that it is the patient’s body and life.

I know this can be difficult as you watch people making foolish choices. But that is autonomy. All of us, including you, are allowed to make the decisions that make sense in the context of one’s own life. (Of course, there are different boundaries in pediatrics.)

One technique I use with patients is to say, “Here is the ideal plan. Now let’s talk about your plan.” That allows the two of you to partner together to build a plan, although it might not be ideal, it is something the patient is willing to consider and to try. And then perhaps in the future, the patient will be willing to consider the other options you would like him or her to try.

Have a kind and respectful day.

Autonomy and Patient’s Rights

Autonomy means that a person makes his own decisions, so it only works with people who have the capacity to make their own decisions. If you have determined that your loved one still has capacity, then this is the correct decision making option. With Autonomy, the person gets to say what should be done to his body.

When I went to my doctor to talk about my injured back, my doctor told me what options were available to help me get better. He said I could try physical therapy, have a cortisone injection in my back, or just wait and see if it got better over time. Because I had the ability to think for myself and to make my own decisions, I was able to choose what I wanted to do. I got to think about the different options I was given and then make my own decision. I had Autonomy.

Here are some of the patients’ rights that come with using autonomy:
• Patients have the right to receive all the information they need to make a good decision.
• Patients have the right to make their own decisions.
• Patients have the right to refuse treatments they do not want.
• Patients do not have the right to demand treatments that will be medically ineffective or are medically inappropriate for their condition.

It is important to realize that there are limits to a patient’s rights. A patient is limited to asking only for treatments that will benefit her. This limitation makes sense. It would be pointless, and potentially harmful, to provide a treatment or medication that would not improve the patient’s condition.

Keep in mind that autonomy only works with people who have the capacity to make their own decisions. If you have determined that your loved one does not have decisional capacity, you will have to use different tools such as Substituted Judgment or the Best Interest Standard. (I will cover these two later this month.)

Have a kind and respectful day.