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.

Family as Stakeholder

I had an interesting discussion the other day about what to call the family when they are involved in the patient’s care. Do we call them simply family? Or caregiver? Or stakeholder?

Each of these terms comes with assumptions about the family’s role in the healthcare setting.

If you are a caregiver, you are changing someone’s diapers and helping push their wheelchair. If you are the family, then I would ask, “Are you there to help or are you going to make things worse because of the conflicts already within your family?”

I like the term, family as stakeholder because as a stakeholder you get a voice.

You have a stake in what is happening to your loved one. You have to take off work to go with the patient to their doctor’s appointments. When the patient is discharged from the hospital, you are responsible for their care. When the patient can’t pay their bills, you may feel responsible, even though you aren’t really responsible. While the doctors and nurses may grieve when the patient dies, it is your own deeper pain and loss you will have to deal with. Even though you aren’t the patient, you experience the effects of the situation.

Now, if you are from a culture where the family is more important than the individual, then your family may make it difficult for the healthcare team because the “family as decision maker” isn’t how healthcare works. Healthcare is based on autonomy which means the patient is in charge of making the decisions about their body. Now I am a big fan of autonomy because it is the patient’s body which will feel the effects of the medications, the pain of the surgery and the long term suffering associated with their disease. As the family, we only witness what they are going through. But as much as I love autonomy, I understand how hard it is to be the family and see your loved one in pain, afraid or maybe dying.

The pediatric physicians get this. Pediatricians practice “Family Centered Medicine.” What does this mean? It means they take into account how the patient’s situation is affecting the entire family. The patient is still the primary person that they focus on but they don’t ignore that the family has a role in whether or not the child will get better. But this isn’t how it works in adult medicine. It is only about the patient.

So what can you do if you want a voice? Be cooperative and respectful when you are dealing with the doctors and nurses. Say please and thank you when people help your loved one. Pay attention to what the doctor is saying because the patient may be too sick to listen. And when you see something that is going wrong, don’t threaten to sue but instead bring it to everyone’s attention and ask, “How can we solve this problem together.” You don’t want to become the enemy. You want to be a part of the team.

I had an interesting discussion the other day about what to call the family when they are involved in the patient’s care. Do we call them simply family? Or caregiver? Or stakeholder? Each of these terms comes with assumptions about the family’s role in the healthcare setting. If you are a caregiver, you are changing someone’s diapers and helping push their wheelchair. If you are the family, then I would ask, “Are you there to help or are you going to make things worse because of the conflicts already within your family?”

I like the term, family as stakeholder because as a stakeholder you get a voice. You have a stake in what is happening to your loved one. You have to take off work to go with the patient to their doctor’s appointments. When the patient is discharged from the hospital, you are responsible for their care. When the patient can’t pay their bills, you may feel responsible, even though you aren’t really responsible. While the doctors and nurses may grieve when the patient dies, it is your own deeper pain and loss you will have to deal with. Even though you aren’t the patient, you experience the effects of the situation.

Now, if you are from a culture where the family is more important than the individual, then your family may make it difficult for the healthcare team because the “family as decision maker” isn’t how healthcare works. Healthcare is based on autonomy which means the patient is in charge of making the decisions about their body. Now I am a big fan of autonomy because it is the patient’s body which will feel the effects of the medications, the pain of the surgery and the long term suffering associated with their disease. As the family, we only witness what they are going through. But as much as I love autonomy, I understand how hard it is to be the family and see your loved one in pain, afraid or maybe dying.

The pediatric physicians get this. Pediatricians practice “Family Centered Medicine.” What does this mean? It means they take into account how the patient’s situation is affecting the entire family. The patient is still the primary person that they focus on but they don’t ignore that the family has a role in whether or not the child will get better. But this isn’t how it works in adult medicine. It is only about the patient.

So what can you do if you want a voice? Be cooperative and respectful when you are dealing with the doctors and nurses. Say please and thank you when people help your loved one. Pay attention to what the doctor is saying because the patient may be too sick to listen. And when you see something that is going wrong, don’t threaten to sue but instead bring it to everyone’s attention and ask, “How can we solve this problem together.” You don’t want to become the enemy. You want to be a part of the team.