CPN | “I thought you’d never ask.” The Conversation(s): Why it matters, how it helps, who initiates It

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“I thought you’d never ask.” The Conversation(s): Why it matters, how it helps, who initiates It

I learned yesterday of something I have suspected: research indicates that when people are seriously ill, in the majority of instances, it is the patient or the patient’s family, and not the doctor, who initiates ‘The Conversation’ about what their care goals and values are and what matters to them. (The Conversation is typically really a series of conversations that roll out over time.) Care goals, values and what matters are the key ingredients to making thoughtful decisions about medical care, living with illness, and then transitioning to end-of-life when the time comes. To stress the point, in most instances, it is not the medical provider who initiates the conversation. Given how important this conversation is – how it informs all facets of a care plan and the experience as it unfolds – from diagnosis through to end-of-life – this is certainly disappointing and definitely a problem.

Who is responsible for making sure that our goals and values are known and understood, for eliciting what matters to us – for ourselves and for our loved ones? I believe that BOTH the patient/family and the medical provider are responsible. And if the provider isn’t going to initiate the conversation, then it is up to the patient or the family.

We were fortunate. Our daughter’s primary care pediatrician knew it was important to have these conversations and we were eager to have them. So we were always ready for each other. He practiced the fundamentals of palliative care and asked us what we would and wouldn’t want for Cameron, what conditions we would or wouldn’t find acceptable, what quality of life meant to us, what we thought mattered to her and to our family. These conversations helped us decide not to give her a G-Tube, to use an NG tube when she had her second pneumonia, and to select comfort care when she had her last pneumonia.

We were lucky because we had a doctor who was practicing palliative care. With the right training, primary care pediatricians can have these conversations – and we know of several initiatives that are working on delivering this training. Certainly, sub-specialists working with seriously ill children also need to be trained in this. These conversations are core to what constitutes good care, including care of the soul.

In the event you and your child’s medical team are not having these discussions, we have a few suggestions:

It is never too soon to start talking.