BY BLYTH LORD

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:

• Ask if palliative care is available (in the hospital, in the community) and ask for your child to begin receiving palliative care. Do not let anyone tell you your child doesn’t need it, that it’s too early (they’re confusing palliative care with hospice). Greg, Abby’s Dad, went looking and wouldn’t take No for an answer and that has made a huge difference in his daughter’s care
• Initiate the conversation yourself by indicating that you want to talk about what matters to you and your child. Your child’s team may be worried that such a conversation would upset you and they don’t know how to broach it with you. If you initiate, they should be able to go there with you. Paula, Lydia’s mom, has some wise words on this and how it helped her go forward.
• Use these tools: This Pediatric Starter Kit from The Conversation Project guides you in starting the conversation, and this one from Ariadne Labs, adapted for pediatrics by CPN advisor and pediatric palliative care doctor Pat O’Malley, outlines the things to consider and cover when having the conversation over time.
• Be open to the conversation if your child’s provider initiates it. Do not shut it down. Barb, Jake’s mom, shares how it helped her.
• If your child’s specialist suggests a palliative care consult, take them up on it. It is never a bad idea or too early. Here courageous mom, Genny, mother of June, writes about how she wishes her daughter had been referred much sooner.

It is never too soon to start talking.