I borrowed www.angelovolandes.com/the-conversation/The Conversation: A Revolutionary Plan for End-of-Life Care by Angelo Volandes, M. D. from the library. It's now sitting in my Amazon shopping cart, just waiting to show up on my doorstep. It's that good.
The Conversation refers to a discussion about desires for end-of-life care. It's based on four areas.
This isn't an easy discussion for most people and the author offered several tips for starting The Conversation. He also included four additional questions for those who are already ill.
We all need to think about these questions, and the sooner the better. We need to share our wishes with our family. We need to talk with our medical practitioners. We need complete the paperwork to support our wishes and decisions, which may include advance directives, living wills, and identifying health care proxies.
Dr. Volandes illustrated the importance of The Conversation with stories of his experiences as a physician. He shared stories of patients and their families who wanted every life-prolonging intervention available as well as those who opted for comfort care. These real-life examples were vivid and relatable.
One of Dr. Volandes' achievements was the production of a video to help patients and their families make decisions about end-of-life care. This is a topic that is uncomfortable for many people, including health care professionals. The video contains information about the available options and facts related to each. For example, the video explains that fewer than 10% of patients with advanced cancer who receive CPR in the hospital survive and eventually leave the hospital. Fewer than 10%. Dr. Volandes found that so many people requested full code / advanced CPR because they believed their lives would be relatively enjoyable afterwards, even while hospitalized. They didn't know they'd likely be on ventilators with several broken ribs and a steady stream of pain medication that rendered them unable to interact with their families.
Whatever your current state of health, please consider starting The Conversation with your family. Dr. Volandes wrote about a couple who had known each other for 50 years, yet the type of care Dr. Volandes believed the patient wanted, based on his conversation with him, was very different than the type of care the patient's wife advocated. She said, "We never really spoke about this." Take the time to talk about it now.
How do you want to live?
The room was dark when I walked by. Nurses were bustling in and out, and although it was a quiet scene it was chaotic. I made my way to the end of the hall to take solace in the view of the park while I waited. I was there to photograph the last moment's of a newborn's life.
The floor-to-ceiling windows gifted an expansive look at the old growth trees in one of the city's oldest parks. I could see children playing at the playground. Adults walked with their dogs. Several people in scrubs were walking quickly along the trails to catch a quick bit of exercise and fresh air before returning to the hospital.
Behind me the quiet chaos continued. A nurse approached me to let me know they were taking care of a few more things and she'd come for me when the family was ready.
This newborn boy, who arrived in the world the day before, was releasing the fragile grip he had on life. The chaos in his room was primarily for his mother, who was recovering from his C-section and overcome by the physical, mental, and emotional anguish of this reality. The nurses were doing everything they could to take care of her so she could be cognizant and comfortable during her son's final moments.
While all of this was happening, I stared out the window. I felt very small. Here I was, standing alone in the hallway listening to hurried footsteps that carried bodies and brains that saved lives. I was surrounded by people who every day change lives with the care they provide. They were working so hard to make this last day the best day they could.
All I had was cameras.
I couldn't save their son and yet they asked to see me. I couldn't relieve her pain, and yet she wanted me to come.
It was the first time I felt so insignificant as a photographer and a person. I felt like an intruder.
The nurse returned for me, shared a few words about baby's condition, and asked if I needed anything. The family was ready.
Before I knew it I was standing in that very dark room. The chaos had ended. Dad held his son and Mom sat next to him in her wheelchair. A family member stood against the wall opposite Mom and Dad. They asked the nurses to leave so they could be alone with their son. Alone with their son and a photographer they had never met.
Thank goodness for training and habit. I introduced myself and asked my usual questions of "what do you most want to see?" and "what do you not want to see?" without thinking about it. From different angles and distances I documented this precious boy's hands and fingers, feet and toes, hair, eyes, and everything else that wasn't obscured by monitors or other equipment. Dad held his hand. Mom stroked his foot.
I returned to the window to center myself when I left the room. I couldn't save their son and that was crushing. How wonderful it would be to tell someone that I had been able to perform some life-saving feat. What I could do was save a piece of him.
With photographs I could give these parents a small piece of forever. I could show them everything in the moments I was with them - the moments that were both glacial in pace and passing by in a blink.
With photographs, these parents can save their son. They can save this part of him. They can keep their memories of him and the time they had together strong. If there is only one way he can be with them as they move through the rest of their lives, I am moved to tears to be a part of that. I can give them this gift.
It's not life. It is a piece of forever. I hope that helps.
I see a lot of incredible moments of the human experience while being with families in love and grief. From each family I learn, and those lessons and points to ponder are what I wish to share with you here.