How Do You Want to Die?

Your doctor comes into the exam room or your hospital room and asks you, “Do you want us to do CPR?” (CPR meaning cardiopulmonary resuscitation or bringing you back to life after you have died or as some doctors brutally put it, “pounding on your chest.”) What would your answer be?

I’ve asked many groups of doctors, “How many of you would like to die by CPR?” And no doctor ever, ever raises their hand. What is it that they know that they’re not telling us? They know that the chance of CPR working is minimal, sometimes even 0%. But they don’t tell you this. They don’t tell you that it’s not like on the television show ER. On ER, CPR works about 80% of the time. In real life, if you’re healthy, CPR works about 15 to 20% of the time. And if you are close to death, CPR works less than 1% of the time and will prolong your suffering.

Now just to be clear, CPR does work well if you’re a fairly healthy person having a sudden heart attack. To illustrate this point, one hospital told me that it would be best if CPR was only done on visitors who dropped dead from a heart attack. Of course that was said as a joke, but the people in the hospital understood that there was some truth in it.

The other thing they don’t tell you is that it can be brutal. You may be brought back to life but in a worse condition than before both mentally and physically. Or that you and your family won’t have the opportunity for a peaceful and profound death experience. When you picture the last minutes of your life, do you see strangers straddling you on a bed, thumping on your chest, all alone, while your family waits outside the door? Or do you see a time with family and friends gathered around the bedside, perhaps with music being played or prayers being said or words of love being expressed?

I don’t know about you but I know what I want. I want a peaceful and dignified death.

A profound death is the choice you’re not being offered because the doctor is not asking you enough questions. Okay, they should ask you about CPR, just in case you’re one of the few lucky ones that will benefit, but there is more to be asked. They should also ask, “How can I respect you and help you as you die?”

But doctors don’t ask this. Why? Because they are afraid of death, because they care too much about you and they don’t want you to die, and because they don’t want to fail. I can understand that doctors have good reasons for not talking about death. Good reasons because they’re good people with caring hearts. But these reasons can get away in the way of us having the opportunity to determine how we want to die.

So what can we do? When the doctor says, “Would you want CPR?” give him your answer and then tell him that there are other things he should know about where and how you would want to die too. Now some doctors won’t even ask you the CPR question because they want to avoid the topic so you are going to have to begin the conversation. You’re going to have to teach the doctor to be brave and to be willing to talk with you. You’re going to have to ask for clear answers and for the support you need. And if you find your doctor won’t talk to you, find a different doctor who will. And if after talking with your doctor, you realize they don’t respect or support your choices, find a different doctor who will.

You deserve a good death.

Got a question? Ask Viki.

I Am in Pain, What Can I Do?

One of my hospice patients just called and said that his pain is at a 7 and he doesn’t know what to do. He saw his doctor and the doctor didn’t take care of his pain and said, “See you in two days.”

Are you kidding me? I would like to see this doctor stay at a pain level of 7 for 48 hours. The doctor wouldn’t put up with this if he was suffering and would make sure his own doctor took care of him. But he ignored my patient. When I hear about his happening, it makes me so angry.

Now I know, you must be thinking, “How can this be?” Well this happens a lot for many reasons. Let me tell you a few so you can know how to fix it.

1. The patient doesn’t speak up enough about the pain. If you don’t tell the doctor, how can he help you? If this is you or your loved one, do not leave the office until there is a new plan in place. And the plan should include a time limit for it to start working. If the new pain medicine hasn’t gotten your pain under control within a few doses, then you should call and tell the doctor and then he should adjust the plan.

2. The doctor doesn’t know how to take care of pain symptoms. Okay, now you are really surprised to think of a doctor that doesn’t know how to take care of pain. Well again, this happens all of the time. Most doctors can handle basic pain management but many are uncomfortable when they have to deal with the increasing pain that happens with cancer or other progressive diseases.

3. Maybe you are from a culture where you are encouraged to be brave and stoic about your pain. Now the doctor will end up misunderstanding about your pain and you won’t get the care you need. The doctor will ask you, “How is your pain on a scale of 1-10” or he will use the happy face chart. This works fine if you tell the truth about how much you are hurting but not if you don’t. So speak up and admit you are in pain.

4. Finally, and this will sound harsh but there are some doctors that don’t seem to care. If so, immediately get a new doctor. You should not go through your life in terrible pain and especially if you are dying. You should not have your final days be in pain. If you are dying and your pain is not being taken care of, then ask your doctor to put you on hospice. Hospice doctors and nurses are really good at taking care of pain and suffering.

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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