What nobody is telling you about your Advance Directive

For the patient and family:

The doctor just handed you an advance directive and told you to fill it out. What do you do now? Do you want a feeding tube? Do you want to be put on a ventilator? How do you answer these questions? Do you even know what these questions mean? The doctor is asking you the wrong questions. What he should really be asking is, “How do you want to live after a serious illness or injury? What kind of condition/suffering would you be willing to endure?”

The advance directive form in not just a death form, it goes into effect when you can no longer think clearly enough to make your own decisions. Now, maybe you will only be incapacitated for a short period of time and someone will need to make your medical decisions for a few weeks or maybe this will be forever. An advance directive is one way to stay in charge of your life even when you can’t speak for yourself.

So the right question is, “What kind of life would you want to live if you 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 vs. 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.

If you would like my special report on “An Insider’s Guide to Filling out the Advance Directive” and other special reports in the future, sign up for my newsletter and once a month I will send you inside information.

The important question we forget to ask our patients.

For Healthcare Providers:

When you hand your patient an advance directive you may be making a critical mistake. We usually ask the patient, “Would you want a feeding tube? Would you want to be put on a ventilator?” The patient doesn’t even know what these questions mean. Most of our patients are medically illiterate. And if we get the answers to these specific treatment questions, it may get us into trouble when the medical condition they are brought in for doesn’t exactly match the situation that was discussed. For most people, it is not the specifics of the medical treatment but the big picture of their life that will matter. So what you really should be asking is, “What kind of life would they want after they are discharged from the hospital.” Ask them, “What kind of life would you want if you your mind no longer worked well or if it didn’t work at all? What kind of condition or suffering would you be willing to endure?”

Why is this type of question important? You’re the doctor; you know how to practice medicine. But what you don’t know is what would make for a “meaningful recovery” for this particular patient. Here’s what I encourage people to add to their advance directive. Their own “Meaningful Recovery Statement.”

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, my doctors will know what is important to me. Have your patients write one that is meaningful to them and attach it to or write it on their advance directive.

One more thing, please address the issue of terminal vs. non-terminal situations with your patients. It is not so much the dying that is the problem but the long term lingering, in a terrible condition that many people find reprehensible.

If you would like my special report on “An Insider’s Guide to Filling out the Advance Directive” and other special reports in the future, sign up for my newsletter and once a month I will send you inside information.

Getting the most out of this website/blog.

This blog is divided into two sections. The first section is my dual blog. What is a dual blog? Well, most blogs are written for one audience. But I designed this site to help two audiences, patients and their families and the healthcare professionals that are taking care of them. I will be writing about the same topic, side by side, from both perspectives. So if I am talking about organ donation, I will tell patients and families what they need to know about the organ donation process. And then I will write a sister blog piece which will help the healthcare professional understand what the patient and family will need from them during the organ donation process.

I believe that information is power so I encourage you to read what I have written for the other group. If you want to know what secrets I am telling doctors about working with patients, then read their section. If you want to know what I am doing to help patients be better patients and to help them get better care, then read their section.

The other main section I encourage you to read and to participate in is the “Ask Viki” section.

Who might need to contact me? Everyone and anyone.
If you have been to the doctor or are in the hospital and you have questions about how to get the care you need, write to me.
If you are a healthcare professional and you are dealing with difficult patients or situations, then ask me about it and I can help.
For anyone who has to deal with an aging parent or grandparent, I can help you.
And finally, if you are dealing with someone who is dying, or you’re dying, I can help.

Your questions will help me reach my goal of helping as many people as I can. I want things to be better for all of us.

5 Reasons We Will Never Have National Healthcare

Reason #1.
You, the patient, are offered three medical treatment choices:
Option #1 costs $10,000 and works very well with very few side effects.
Option #2 costs $1000 and will also work very well but will have a few more side effects.
Option #3 costs $300 but only works some of the time with lots of side effects.
Which will you choose?

Most people will say, “I don’t want a chance for more side effects or one that only works some of the time, I want the best, Option #1.” Or people might say, “Well it is okay for someone else to choose the 2nd or 3rd option, but I have a right to good healthcare.” And what they mean by “good” healthcare is really great healthcare. For national healthcare to work, we need people to be willing to accept and to choose the second best choice sometimes which may come with a few more side effects. The system can’t afford the best all of the time. To make this happen, we have to adjust the rules doctors live by which brings me to reason number two.

Reason #2.
Doctors must give informed consent which means people have to be given enough meaningful information so they can make a good decision regarding what treatment to choose. This information would include being told about the first, second and third best options. Who is going to say, “No, doctor, really it is fine with me. Give me second best option.” We are starting to see this problem for certain hospitals that statistically provide second rate care and therefore may eventually need to disclose to patients, “You may be better off going somewhere else.” So if doctors need to tell the whole truth, the system will break down. Informed consent will have to be limited to those treatments allowed under the national health plan.

Reason #3.
The other problem doctors will have is that they will still be held legally liable for providing good healthcare. If you don’t get better or you get extra side effects, you will sue the doctor. Why is this doctor’s fault when the system says he has to give you option #2 or #3? Our malpractice system will have to change to protect doctors who are only following the rules set up by the national healthcare system.

Reason #4.
National healthcare will mean a more equal distribution of medical resources. What that really means is that many of us will have to accept a little less for everyone else to receive a little more. Now, you may say you want this but how many people really act in an unselfish way? I know lots of people who say they care about the poor and underprivileged, but I don’t see them sending a poor family half of their paycheck. We want the government to take care of everyone while we still get everything we want. But we can’t get everything we want with national healthcare. It just isn’t possible. But, everyone could get reasonably good care.

So, we are part of the problem. We are selfish. Our selfishness is a deeply imbedded societal belief about what our obligations are to others. This country was built on individualism and watching out for your own best interest. We are not a country which cares more about others above ourselves. And those of you who just said in your mind, “Well I care.” Then do something significant to prove me wrong.

Reason #5.
The last reason things won’t change is that our politicians are not interested in voting for national healthcare. Right now they are receiving a substantial amount of money from insurance companies and pharmaceutical companies. Why would they want to stop getting all this money? They don’t. And you wouldn’t either if you were in their place. Politicians talk a good story but when it comes to action, nothing gets done. How many politicians said they are for national healthcare during their campaigns? Most, but still nothing will happen. It is about money.

But we, as individuals have power. If the politician gets voted out of office they will lose their financial kickbacks. So, we have to tell them that if they want to stay in office, they have to give us national healthcare. And if they don’t vote it in this time, we must vote them out of office. We are not helpless. If we truly care, and I hope we do, we need to speak up, speak out and vote responsibly. Contact all of your local and national politicians to vote for national healthcare. And contact them over and over again. They won’t take us seriously unless we get serious about caring for all Americans.

AB 2747 – End-of-Life Obligations and Communication

There are two parts to this California legislation. The first part addresses your obligations when your values limit what valid medical options you are willing to offer. The second part addresses when and how you should communicate about end-of-life choices.

The bill states that some patients and families suffer from a bad death since some physicians will not offer valid medical options. For example: If you your morals/values will not allow you to withdraw support or to write a DNR, then you are allowed to not participate in procedures you are morally opposed to. But according to AB 2747, you are not allowed to impose your values on the patient by not telling the patient about the other medical options. The law states that:

If a health care provider does not wish to comply with his or her patient’s request for information on end-of-life options, the health care provider shall do both of the following:
(a) Refer or transfer a patient to another health care provider that shall provide the requested information.
(b) Provide the patient with information on procedures to transfer to another health care provider that shall provide the requested information.

This has been the ethical standard for many years, but now it is the law. If you don’t want to talk about end-of-life issues, then by law, you must help the patient transfer to another doctor.

This brings me to the second part of the law. When a health care provider makes a diagnosis that a patient has a terminal illness or has less than one year to live, the health care provider shall, upon the patient’s request, provide the patient with comprehensive information and counseling regarding legal end-of-life care options. If the patient indicates a desire to receive the information and counseling, the comprehensive information shall include, but not be limited to, the following:

(1) Hospice care at home or in a health care setting.
(2) A prognosis with and without the continuation of disease-targeted treatment
(3) The patient’s right to refusal of or withdrawal from life-sustaining treatment.
(4) The patient’s right to continue to pursue disease-targeted treatment, with or without concurrent palliative care.
(5) The patient’s right to comprehensive pain and symptom management at the end of life, including, but not limited to, adequate pain medication, treatment of nausea, palliative chemotherapy, relief of shortness of breath and fatigue, and other clinical treatments useful when a patient is actively dying
(6) The patient’s right to give individual health care instruction pursuant to Section 4670 of the Probate Code, which provides the means by which a patient may provide written health care instruction, such as an advance health care directive, and the patient’s right to appoint a legally recognized health care decision maker.

It has always been ethically appropriate to have meaningful end-of-life conversations which discuss all the valid medical options including the option of having a good death. But now it is the law. You must have these conversations and offer all of the above options.

Why bother, the patient is going to die anyway?

Dear Viki,

I am a physician and need your advice. We had a recent case involving a middle-aged man who had terrible heart attack and was going to die soon. The family wanted us to keep trying and one of the other doctors said, “Why bother, the patient is going to die anyway.” I wasn’t sure what we should do. Should we keep trying to prolong the man’s life even though all we could do is to give him a few more weeks? Is it worth it?

This is a heartbreaking question. The first rule in bioethics is that we should always try to do what the patient has asked us to do. If he wanted us to keep going, even though it was for only a few more weeks, then that is what we should do. If he didn’t want to prolong his dying, then we should allow him to have a peaceful death. You didn’t tell me if he had made his wishes clear so I can’t give you a specific answer.

The next rule that doctors need to follow is that you are only obligated to provide appropriate, beneficial treatments. If you, as a doctor, know that _____ treatment won’t work, you don’t have to offer it. You don’t have to provide inappropriate and ineffective medicine no matter how hard the patient’s family begs for it. Patients have the right to refuse any treatment but they do not have the right to demand inappropriate treatments. You get to exercise your good medical judgment.

Here is where the real ethical conflict is in this case. Since you could keep him alive for a few more weeks, then the issue was not whether or not it was possible medically, but whether or not it was the “right” thing to do for this particular patient. Did keeping him alive provide him with the quality of life that he would want? To answer the question, “Is it worth it?”, we would have to ask the patient and if he wasn’t able to tell us, then we would need to ask his loved ones what he would say. For some people, lingering for a few weeks would only prolong their pain and suffering. For others, there may be tremendous meaning in those last weeks.

I think that as healthcare professionals, we sometimes forget that a few more days may mean the world to everyone involved. Whether it gives people time to travel to say their goodbyes or to make peace with the impending death, it matters. This case reminds me that we have to ask people what they would want so we will know how to care for them when their time comes. Ultimately, this comes down to respecting our patients while we practice good medicine.

When you are in trouble, the hospital’s bioethics committee can help.

Every hospital has a bioethics committee. It usually includes doctors, nurses, social workers, chaplains, community members and other people interested in medical ethics. It is supposed to help patients and families as well as healthcare professionals with difficult situations. When a conflict occurs and people can’t figure out what the right thing to do is, the bioethics committee should be able to help.

In most hospitals, you just call the hospital operator and ask to speak with someone from the bioethics committee. They will page the person on call and the bioethics committee member should call you back within two hours. Then you can tell them what the problem is and what kind of help you need. If that doesn’t work, call the Medical Staff Office at the hospital and ask to speak to the Chair of the Bioethics Committee.

A colleague of mine said she recently called because her family was at war regarding what to do for their grandfather. When she called for help, she was told that only doctors could call for these services. This is not true. Do not let the operator or other medical professional talk you out of contacting the ethics team.

What kinds of things can be taken to an ethics committee? Here are just a few examples.
If you are the patient and the doctor is not respecting your wishes, ask for help.
If you are the patient or family and you are having problems communicating with a difficult doctor and need help.
If you are the family member and your family is arguing about who should be in charge of making the decisions for your loved one.
If the doctor won’t return your calls or won’t talk to you and you need help.
If you are part of the healthcare team and you see something unethical or wrong.
If you are a person on the healthcare team and you can see that a conflict is starting and you think the people involved need help.
If you are the doctor and you think the family is prolonging the patient’s dying or suffering for personal gain, ask for bioethics help.
If you are the doctor and the patient or family is demanding treatments that are not medically appropriate.
If you are the doctor and you are having problems communicating with a difficult patient or family.

It is always better to ask for help sooner than later. Problems are more easily solved when they are dealt with right away.

I have to tell you the truth about one thing. Most hospitals have good bioethics committees but not every hospital has a well trained committee. If the committee isn’t able to help you enough, I would suggest working with the social worker assigned to the patient to find a better solution. If that doesn’t work, and the problem is with the doctor, fire that doctor and get a different doctor. Try not to make enemies along the way as you still need good care for your loved one. The healthcare team is responsible for the well being of the patient and you need to treat them respectfully as you ask for your concerns to be addressed. You may want to read my section on the KIND Method to get other ideas about problem solving in the healthcare setting.

Got a question?

When to ask the bioethics committee for help.

It is always better to ask for help sooner than later. I see this all the time. Healthcare professionals wait until the problem with the patient or family gets really bad and then they ask for help. But because they have waited so long, they have now created an adversarial relationship and the patient or family is entrenched in their demands. Medical and ethical problems are more easily solved when they are dealt with right away. I am sure you have said at some point, “If the patient had only come to me sooner, I could have saved them.” It is no different with ethical dilemmas. Get help early by working with the social worker on the case, ask the chaplain for help in dealing with the demanding family and call in your hospital’s bioethics committee.

What kinds of things can be taken to an ethics committee? Here are just a few examples.

? Code status
? Capacity
? Evaluating who is the right decision maker
? Poor prognosis
? Goals of treatment
? Advance Directive
? End-of-Life
? Beginning-of-Life
? Futile treatment
? Guardian involved
? Psychological/Spiritual Crisis
? Conflict between any combination of the staff, family or patient
? Breakdown in communication
? Moral distress of healthcare professional being asked to do something they are uncomfortable doing
? Medical errors
? Family prolonging the death for personal gain

I have to tell you the truth about one thing. Most hospitals have good bioethics committees but not every hospital has a well trained committee. If your hospital’s bioethics committee isn’t helping you, then tell the administration that you expect improvements to be made. A good bioethics committee can not only help resolve ethical dilemmas, but they can also minimize lawsuits and keep the hospital off the front page of the newspaper. If you would like more information about problem solving, you may want to read my section on the KIND Method to get other ideas. Please contact me if I can be of help to your hospital.

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