Updated Thursday, April 12, 2018
We were walking holy ground. Both of us knew it, but neither needed to say it. It was a conversation you never prepare for, but always hope to have.
The cancer cells were spreading without mercy through my close friend. Roland and I had met regularly for breakfast. We shared our stories, processed our dilemmas, expressed our fears, celebrated moments of life, and laughed a lot. We talked about changes in our bodies, our families, and our goals. (Roland speaks with one of the members of our breakfast group in the photo at right).
But then it was a medical change in Roland--seizures, lung cancer diagnosis, metastasis to the brain. Then the flurry of medical visits, the discussion of treatment options, the updates on recent treatments, and the waiting. Always the waiting. Moments of hope, but repeated setbacks.
Then more seizures and Roland was hospitalized with significant changes in speech and alertness. I cautiously knocked on the hospital room door that Saturday morning, not knowing if I would be recognized, or spoken to or even understood. To my delight, Roland was alert and aware and engaged, able to describe his condition and how he was adjusting to it.
Start the conversation
This is where our conversation quickly went deep, discussing life with the backdrop of impending death. Roland readily opened up about his condition, his thoughts on treatment, and what aspects of life were most important – but noted that he had not thoroughly documented his thoughts and wishes. I offered to guide and document our conversation.
Determine what is important
Roland identified brain function as very important – recognizing and talking with loved ones, recalling past events, reading and writing, and showing creativity. He would be concerned if he could not move independently, be active, and get outside. He would not want life-sustaining treatment if he was unable to interact with others. At the moment, he felt his quality of life was sufficient to continue treatment, but would not accept interventions with lots of complications or discomfort. If the end-of-life was approaching, he wished to be near the people he knew and loved, and wanted to be as alert as possible.
Ask the right 4 questions
It was a “simple” conversation focused on 4 vital questions:
- What pieces of life are most important?
- What are the health goals?
- What interventions wound be acceptable to maintain health?
- What issues should be prioritized if end-of-life was inevitable?
Less than 24 hours later, Roland had more seizures and never regained full speech or consciousness. He died peacefully several weeks later, surrounded by family, in a homelike environment with hospice support.
Roland and his family were blessed by a brief period of alertness, his willingness to verbalize his wishes, and a listening ear to document his thoughts. His family relied heavily on this discussion during many subsequent decisions.
The time is now
Many people feel it is “too soon” to have such advance care planning discussions, only to have life demonstrate that it is already “too late.” Illness prompted Roland to have such a conversation, but often we do not even get that reminder.
Many people delay these discussions presuming there will be more time, fearing the decisions are too difficult, hesitating because of the reactions of loved ones, or just not realizing the importance. These conversations are not primarily about death, rather about how we want to live, particularly in the waning moments. There is no right or wrong way to do this – it should reflect us and our priorities.
5 simple starting steps
- Decide that you want to do this and will complete it.
- Consider who you would want to help discuss health conditions or make decisions for you if you are unable.
- Think about how aggressively you want to seek to maintain your health. Choices include: do everything; do less aggressive and not heroic treatments; or use treatments only for comfort.
- Document your wishes and priorities.
- Share these thoughts with your loved ones and medical provider.
Click here for forms, resources and education to help you complete the advance care planning process.
Roland and I shared moments of deep conversation about his life. This conversation had very practical implications for subsequent decisions. You can have similar conversations and life benefits, but only if you have them. Begin them now or schedule a specific time. They are relatively simple to do but provide a lifetime of benefit.