There are several different types of conversations I find myself having with patients facing life-limiting illness.
- The “advanced directive conversation”
- The “delivering badnews conversation”
- The “hospice conversation”
These conversations may happen all at once or might be given at different times. At some point, I have to have the conversation that always seems to get me emotional – the real end-of-life conversation. If the patient/family wants to know, I will try and give my best estimate of life expectancy as one of the following ranges — minutes to hours; hours to days; days to weeks; weeks to months. Whether they want me to be that specific or not, I need words that will allow patient and family to hold on to hope while allowing them to prepare for approaching death.
I want to share some of the words I use as I struggle to be the physician, whose duty it is to inform/explain, and the fellow human being who is emotionally present for a frightening and potentially overwhelming discussion. The patient’s journey is changing – going forward, it will be less of a medical journey and more of an emotional/spiritual journey – and I need to help with that transition. The patient needs to feel that I know about the disease while caring deeply for him/her as a person. Here goes…“I know you have had a lot of bad news in the past few days. I can only imagine how hard this has been for you and your family. How are you holding up?” (I listen and acknowledge expressed emotion, both verbal and non-verbal.)
“Please know that every medical team member involved in your care is hoping and praying that everything goes well for you in the days ahead. It’s important not to lose hope. We’re hoping for a lot of things, but high on our list is that we’ll soon have you feeling better and that you’ll have good quality time ahead at home with your family. I wouldn’t be doing my job well, however, if I didn’t talk to you about some concerns. These are concerns I try and go over with every patient who has had bad news like you have had. It’s not an easy conversation to have, but it’s important. Do I have your permission to talk about these concerns?” (I listen, and I stop the conversation if the patient indicates he/she is not ready for it. There’s always another day.)
“It’s impossible to predict the exact course of any illness or exactly how long someone might live. But things can change very quickly with a condition like yours. It’s good to hope for the best, but it’s equally important to make sure we have plans in place in case things don’t go as we want them to.” Being prepared means “taking care of business” and I am thinking not only of financial/legal business, but emotional and spiritual business.
Here are some things I recommend to patients with an illness like yours:
- Now is the time to make sure that you let all the very important people in your life know how much you love and care about them. Hopefully, you do that anyway, but it’s very important now. Reach out.
- It’s time to consider asking forgiveness from those you feel you might have wronged.
- It’s probably time to also consider forgiving those who may have wronged you.
- It’s time to make sure financial and legal affairs like wills, living wills, etc. are in order and that those you trust have access to information they might need when you may no longer be able to communicate.
- And, if you are a religious or spiritual person, it’s time to make peace with your God or higher power.
“I am not telling you these things because I think you are going to die tonight, tomorrow, or next week. No one knows for sure how much time you have left. What I can tell you with some certainty, however, is that there are going to be some better days and some worse days ahead of us. I am hoping that by unburdening yourself of some of these concerns now, you will be able to make the best of the good days ahead and more easily slide through those not-so-good days. What are your thoughts about these concerns?” (I listen and acknowledge expressed emotion, both verbal and non-verbal.)
“Though you haven’t brought it up, I know many patients wonder if they will have uncontrollable pain or suffering ahead of them. I want to let you know that the vast majority of time we are able to control symptoms in cases like yours. This is teamwork, however, and you are the most important part of the team. If you promise to let us know when you’re hurting in any way, we promise to do everything we can to keep you comfortable.”
“I know this conversation has not been easy for either of us. I appreciate your willingness to talk about these difficult issues. In my heart, I know being open this way is the right thing to do, and I hope you feel the same. I also hope you will feel free to speak with me regarding other issues that might be on your mind. Are there any questions or other things you want to share now?” (I listen.)
Even if the patient does not want to hear specifics about prognosis, from this talk they clearly understand that there is some urgency in “taking care of business” while holding on to hope. Though this is about all that a patient/family can take at one sitting, the conversation tends to open a communication door that allows for some honest give and take in future talks.
This conversation usually gets two reactions:
- Everyone in the room (including the doctor) is tearful
- The patient (and family members if present) express gratitude.
Just a few closing words of wisdom on conversations like the one above:
- They shouldn’t happen from the doorway. Sit down next to the patient with your eyes preferably at the same level as their eyes.
- If you don’t have time to do the “listening” part of the above conversation, you may want to postpone the conversation altogether.
- Touch can be incredibly meaningful during these conversations.
- I will usually reach out to hold a hand at the first sign of tears.
- Or if no tears, it usually feels right to reach for that hand during the last paragraph.
- Your tears, should they come (and mine often do), are a sign to the patient of genuine caring, not of weakness.
Sometimes our words and our presence are our most important tools and they can be very powerful.