Have you ever talked with your loved ones about how you want to die? Do you know what their wishes are for their deaths?
We donít want to die, of courseóand we donít want our loved ones to die. We donít want to think about it, let alone talk about it. But we all die at some point--there is no escaping it. And if we donít talk about it, we can lose the chance to have or give the good, peaceful death that each one of us deserves.
I have lived this. My son, who was born severely disabled, died when he was a year old. As we realized that he was going to die, it was unthinkable to me and my husband that our baby would suffer. We had no choice but to think about it and talk about it. We used all our medical knowledge, and asked for help. Our son died a good, peaceful death in our arms, surrounded by family.
I used everything I learned from that experience to help my friend when he asked me to be his health care proxy. Jim had pancreatic cancer. From the start, it wasnít goodóbut we wanted to be hopeful. We tried surgery and radiation and chemotherapy. He wanted nothing more than to live; I loved him desperately and wanted the same. So did his doctors, who gave him amazing care.
He wasnít going to live, though; this became slowly but undeniably clear. It became a question of time. And as it became a question of time, it became much more than that: it became a question of how he was going to use that time, how he was going to live--and how he was going to die.
Itís especially hard to talk about death when you are in the middle of it. Not only is it uncomfortable, it feels like giving up. Patients and families don't want to give up on life. Doctors donít want to give up eitheróafter all, we are supposed to make people better. And if the doctor isnít bringing it up, itís really hard for the patient to bring it upóitís not easy to question your doctor, and maybe if your doctor isnít bringing it up thereís hope, right? But sadly, sometimes there isnít. And the chance to die where and how you want can slip away while you wait to have those conversations.
I wish Iíd known about the Engage with Grace movement when Jim was alive. It would have helped so much to know about their One Slide project, their list of questions that we need to be asking ourselves and our loved ones. They are five simple questions about where and how we want to die, who we want to advocate for us, whether we have a living will or advanced directive. It would have made those really hard conversations with Jim and his doctors easier.
We did have those conversations, finally, and stopped treatments so Jim could come home and be with his friends and family and communityówho, with his doctors, cared for him beautifully and gave him a good, peaceful death.
My friend and fellow doctor-blogger Bryan Vartabedian wrote this about the Engage With Grace movement:
Each of us has a story Ė it has a beginning, a middle, and an end. We work so hard to design a beautiful life Ė spend the time to design a beautiful end, too. Know the answers to just these five questions for yourself, and for your loved ones. Commit to advocating for each other. Then pass it on. Letís start a revolution.
Read about the Engage with Grace movement. Ask the questions. Have the conversations. Give yourself and your loved ones the gift of a good, peaceful death.