Building Trust With Patients

My kids often call me “Debbie Downer.” I tell them this is not so. I’m realistic, the devil’s advocate looking at everything from all sides, and I’m honest. This, they tell me, is a downer.

Perhaps they are right, but that is the way I think—I have never been good at white lies. I feel that if you ask me for my opinion I should give you my opinion, the good, the bad, or the ugly. Now this does not mean I am totally devoid of tact—I have, over the years, learned to temper this honesty with compliments and distraction techniques.

Honesty is not always a bad thing: I am also the person who tells you that you have something in your teeth, yanks toilet paper off your foot, or pulls out that skirt, which you somehow tucked into your panty hose, before you leave the restroom.

So how does honesty enter in to treating incurable metastatic cancer as it relates to Kübler-Ross’s well-known stages of grief?

1. Denial: We all have experienced those patients who tell you shortly after being stunned by the diagnosis that they are going to beat cancer, that they will be the miracle. Who am I to tell them “No, most likely not.” Who am I to take away that glimmer of hope in their eyes? So how do you keep reality in the picture without dousing that light? We all know when the doctors come in and tell our patients that their scans are great that patients believe they have been cured—that their idea of great scans differs from the doctor’s idea of a great scan. There is a big difference between cured and no or little progression. Explaining this difference to our patients is important, and it is part of the fine line between likely reality and their fantasy that many of us walk with them on their journey.
2. Anger: How often do we hear “I never smoked, why do I have cancer?” or the hardest question of all “Why me? It’s not fair.” I honestly don’t know how to answer that question; who does? So I agree with them that it isn’t fair and they aren’t at fault. Our patients know we can’t answer that question, so we should not try; rather, listen to them, sit with them, and care with them.
3. Bargaining: “If I have a positive attitude then I will survive.” “I prayed to God to save me, and I know He will.” These are common statements that lead to hard conversations, and I find that just listening is usually best at this point, but sometimes patients push for my opinion. I tell them that if it were attitude, or desire, we would not have to look for a cure. If it were strength, or being a good person, we would not have to look for a cure. When patients talk about their faith or strength of prayer, I remind them that we can pray for what we want, but we also pray “Thy will be done,” and often His will is not our will. There is no such thing as not praying enough or hard enough.
4. Depression: Eventually it becomes obvious, even to those with the strongest cases of denial, they are not going to get better; they are not going to get their miracle. This is when we do a lot of hand holding, not only for our patients but also for their loved ones. And this is when I feel that the trust that has been built with honesty through all of the other steps most benefits the patients. They know they can be open and honest with me; they can be angry, frustrated, scared, and sad.
5. Acceptance: Most of our patients eventually do accept their fate, sometimes before their families. I often try to speak to families together about allowing the patient the freedom to die. I ask them to be honest with each other. Frequently the patient is being brave and fighting for the sake of loved ones, who in turn are being brave and encouraging for the sake of the patient. In reality they all know that it is time to move to the next step but are afraid to be the first to admit it. Sometimes just starting the conversation is all it takes for them to have a frank discussion about what their future and goals should be.

Is it the best policy to be honest with our patients? I think so. Good relationships, especially therapeutic relationships, have to be built on trust and honesty. During this time of upheaval, patients need to be able to have something solid they can count on, someone they can trust, someone who will tell them the truth, even if that truth is a downer.