Are Mixed Messages Harming Your Health?

When you are in the hospital, you are vulnerable to the problem of “Mixed Messages.” What this means is that each of the specialists come in and give you information about the part of the body they take care of. So the pulmonary doctor will say, “Your lungs are doing better.” The cardiologist will say, “Your heart is failing.” And the internist will say, “Your infection is getting under control.” But nobody is giving you the big picture. Nobody is telling you how to interpret all of these pieces of information about your health situation. So here is what happens next. The next day your internist comes in to talk to you about end of life issues. You are shocked and ask, “How can I be dying when my lungs are doing better?” You have just done what most people do. You latch onto the best news and forget to take into account the worst part of the news. Yes, your lungs might be better, but you can’t live without your heart and your heart is failing. But nobody is explaining this to you.

Nurses do the same thing. Each day, different nurses are assigned to you. And each nurse has a slightly different view of how you are doing. Or they say, “You are doing better.” What does “better” mean? It doesn’t mean better and you are going home, it means you are doing better than the worst moment you have had in the hospital. Lots of people die in hospitals that are doing “better.” Better doesn’t tell you the whole story.

So what can you do? You can ask the main doctor, called the attending, to give you an overall update about how you are doing. Not just a part by part explanation, but a “big picture” explanation. And if you are getting mixed messages, make sure you listen to the good and the bad. I know that this can be difficult but it is necessary so you can make appropriate decisions about your health. The only way you can have informed consent is if you understand all of the information, not just the news you want to hear.

Have a kind and respectful day.

Don’t Tell Grandmother She Has Cancer

 

Dear Viki,

The other day, I had a family tell me to not tell their grandmother that she had cancer and was going to die soon. I am not sure what to do. I want to be culturally respectful but I also have to make sure that I am doing right by the patient. It is her life, not the families. What should I do?

Great question. If it was 40 years ago, a doctor could keep information from a patient. Now the rules are different. Here is what you need to do to respect the patient and the culture.

1. Speak directly to the grandmother, hopefully without her family in the room. Ask her, “Do you want the results from the tests we are doing or should I be talking to somebody else? Do you want to make your own decisions or would you prefer that someone else make those decisions for you?”

2. If she says, “Yes, I want to know the results and make my own decisions”, then you will know what to do. Tell her the information. You may also want to check with her if she would prefer to have these conversations in private or with her family present. Sometimes it is just as important to the patient to protect their loved ones as well. Respect the patient’s wishes while you show respect for this family’s culture.

If she says, “No, I would rather focus on getting better and let someone else deal with all of the decisions”, you also know what to do. You now must ask her, “Who should I talk to?” Once she tells you who is in charge, and it might be a 2-3 people, then talk to them. This is called a waiver of informed consent. Patients can act autonomously and waive their right to information. You may want to have her to fill out an advance directive or living will ahead of time and check the box on the form that says, “Starting now, I want _____ to make my decisions for me even though I still have capacity.” If she changes her mind later on, then you can follow her new instructions and begin having her give her own informed consent.

Have a kind and respectful day.

 

Great Community Resources Available

I just walked in the Susan G. Komen “Walk for a Cure” with the KFI 640 team. I was amazed at how many organizations were there to help people who are dealing with a medical crisis. If you are dealing with any healthcare situation, not just breast cancer, I want you to know that you are not alone. There are so many groups who want to help you. These are just a few of the many groups I will be adding to my resource page. If there are support groups and resources in your area for any disease, grief issue or caregiver issue, please forward the information to me and I will post it. I thought I would just mention a few that were at today’s event.

For those struggling with finding mastectomy lingerie, I walked with the ladies from DiMurini. What a great group of people. They all wore pink wigs in honor of all those who have struggled with breast cancer. Check out their healing and helpful products at www.dimurini.com

PALS for Health – They provide interpretation services for those who are interacting with their healthcare providers. I met Tina and she was so passionate about helping people be understood. www.palsforhealth.org This is subject is something that is close to my heart. So many people get misdiagnosed or receive inappropriate treatments because of basic language barriers. This is one area that can be solved so easily by getting interpreters into the offices of doctors. If you are the patient’s family member and you are doing the translations, you may be harming your loved one. Unless you are a medical expert, you may not know how to translate the medical terms and information. Ask for a medical interpreter to be provided for your loved one.

Project Angel Food – They deliver food, which has been personalized to the particular health needs of the patient, to the homes of those affected by life-threatening illnesses. www.projectangelfood.org

The Women of Color Breast Cancer Survivor’s Support Project. – They provide emotional support and crisis intervention for women of color in the Inglewood, California area. I met Angie and she was great to talk with about this empowering and compassionate program. www.woc4me.org

The Wellness Community – They provide cancer support, education and hope. They also have bereavement groups for when you are struggling with your grief. I have many friends who have used their services. I didn’t know that they are all over the United States but now that I know, there may be one in your town. www.thewellnesscommunity.org

Again, please let me know who has helped you in your area and I can pass it on to those who are in need.

What is The K.I.N.D. Method?

The K.I.N.D. Method

K – Knowledge

I – Inquire and listen

N – Need to brainstorm

D – Decide and Do it

The Kind Method is a problem solving approach to making ethical medical decisions. The four step process is based on four core concepts: Knowledge, Inquire and Listen, Need to Brainstorm, and Decide and Do it.

The first step is Knowledge. If you don’t know enough information, you won’t be able to make a good decision. Patients make this mistake all the time when they don’t find out more about their disease and their medical options. Doctors also make this mistake when they don’t find out about the patient’s preferences and quality of life goals.

The second step is to Inquire and Listen. This is where most of us get stuck. We don’t ask enough questions. We don’t ask the right questions. And when people tell us the answers, we don’t listen well enough. Or we don’t like the answers and we refuse to listen. We need to ask better and to listen better.

Once you have collected enough information, then you can begin to figure out what you should do. Don’t just jump to the first thought that enters your mind. Instead do step three. You Need to Brainstorm to figure out your options. What is brainstorming? It is coming up with at least three different choices that you can consider. The choices may be as simple as: 1. Do what the doctor said, 2. Don’t do what the doctor said, or 3. Do only part of what the doctor said. Now that you have these three options, you can begin to seriously think about your choices and how each choice would affect your life. Think carefully because it is your life we are talking about.

Once you have done this, now it is time for step four. The fourth step is to Decide and Do it. At this point, the deciding may be easy but the doing may be more difficult. But if you have gone through the first three steps, you can feel more confident that you are making the right decision and it is time to take action.

Got a question? Ask Viki.

Helping the Family Make the Difficult Decisions

Doctors tell me all the time that they struggle with families that aren’t respecting the patient’s wishes or are not making wise decisions for their loved ones. Over the next months, I will give you many techniques you can use in these situations. Here are two to help you begin.

A dear friend of mine was sitting at the bedside of his wife after her massive stroke. They had been married for over 50 years. As I sat with him he said to me, “The doctors keep asking me what I want them to do. Well, what I want is for them to keep Ruth alive no matter what.” I nodded and listened as he continued. “If they asked me what Ruth would want, she would say, “Let me go, I don’t want to live like this. But the doctors don’t ask me what she wants, just what I want.” I was so surprised that in his grief he understood the difference.

So here are two techniques you can begin to use to improve end of life decision conversations. First, stop asking, “What do you want us to do?” And instead ask, “What would (the patient’s name) want us to? What would (the patient’s name) be telling us to do in this situation?” And if the family member responds, “What I want is …” you stop them and re-clarify that they are supposed to speak as if they are patient. You can always use the classic question, “If the patient was able to wake up for 5 minutes and understand what was going on, what would the patient say?” The trick is to keep silent after the question and let the family member struggle with the question. The silence in the room helps the person understand the significance and the weight of the question. Don’t rush them as they haven’t been thinking about what the patient would want; only what they would want.

Secondly, you need to educate the family about their role as the decision maker early on. Explain to them that they are supposed to make the decisions based on the patient’s values, not what they would want. Tell them that they are supposed to speak with the patient’s voice and wishes, even if it’s hard to do. I think we need to acknowledge how difficult this job is for the family member and to validate their struggles. “I know this must be very difficult for you, but it is important that we respect your loved one and follow their wishes.” If we can begin the conversation with the right questions and to educate families regarding their role, it will provide a good beginning to improving end of life communication. More to come on this topic later.

How Can the Doctor Ask Me to Kill My Mom?

The doctor just told you that you have difficult decisions to make. She said that you have to decide if it is time to let your mom die. Do you want us to take your mom off the ventilator? Would your mom want CPR? How can you decide? Well I have a gift for you. It is not your decision. It is your loved one’s decision. You are just the representative of the patient and are supposed to be speaking as if you were the patient themselves. You are supposed to use the values of the patient, not your values.

Here is where your mom’s doctor went wrong. The doctor should have asked, “What would your loved one be telling us if they were able to speak right now? What would your mom say about wanting CPR? Would your mom want to continue on like this? These are the right questions. But instead the doctor burdens us by making it seem like it is our choice. But it shouldn’t be our choice. We are the surrogate decision maker, the substitute just filling in for the patient. Different states call it different things: durable power of attorney, agent, proxy or surrogate. But no matter what we call it, the rules are the same. You are supposed to honor the patient’s wishes,

I know the doctors never told you this before. But let me explain how it works, it is something called the substituted judgment standard. We are supposed to speak with the voice of the patient. As the decision maker, you are supposed to think about everything you know about the patient, what they have told you in the past, what their values are and what is important to them. Then using this information, do your best to make the decision you think they would make.

What if after considering all of this, you realize your mom would say, “I don’t want to live like this, I would rather die.” Then you have to tell the doctor the truth. I can hear you saying, “But I don’t want her to die.” Of course you don’t. But you have a job to do and it is up to you to be brave. You need to do the respectful and loving thing and tell the doctor what she would say even if it is not what you would choose yourself. This is the gift you can give your loved one by speaking for them one more time. Otherwise you are betraying your loved one and disrespecting their beliefs and their life. I am not saying this is easy to do, but it is the right thing to do. And usually doing the right thing is doing the hardest thing.

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