The team working on The Conversation Project sometimes notes that it would be more appropriate to call our initiative “The Conversations (emphasis on the plural) Project” rather than The Conversation (singular) Project. After all, people rarely (if ever) meaningfully communicate about how they want to live at the end of their lives in a single discussion with their loved ones and care providers.
One poignant example of this comes from Libby Hopkins, a palliative care and hospice nurse with the VA Medical Center in Albuquerque, New Mexico:
Late last year, we admitted David, a Navajo Marine veteran in his 60s with end-stage liver disease, to our palliative care unit. It was easy to assume we knew all that we needed to know about his end-of-life wishes because David executed basic advance directives when his disease process began to progress rapidly. He had chosen a health care proxy, and gave instructions for no artificial nutrition or hydration, and no resuscitation or intubation. During the last week of David’s life, however, we saw that advance care planning can be just the beginning.
What Mattered Most
The sadness of David’s last days was mixed with delight that his eldest daughter (who was divorced with three children) was engaged to her high school sweetheart with whom she had recently reunited. David was very fond of his daughter’s fiancé and — when we asked what was most important to him in his final days — he described his sadness that he would not be alive for the wedding.
On the Wednesday after David shared his regrets about missing her wedding, his daughter asked one of the nurses if it would be possible for her to get married at her father’s bedside in two days. (She had learned that Friday was the soonest she could get a marriage license.) By that point, David was so weak that he spent most of his time in bed or on a recliner. He was only taking small bites and sips of nutrition. He had decided to stop his insulin and had been receiving only medications for comfort. His level of consciousness was low and his cognition was impaired more and more frequently. We knew David didn’t have long to live.
After learning of the request, I visited with David’s daughter, future son-in-law, and wife. I let them know I would help coordinate the wedding, but I could not guarantee that David would be awake, alert, coherent, or alive on Friday. I suggested we have an “unofficial” ceremony as soon as possible. The happy couple wanted Dad to see the “real thing,” however, and also needed time to gather other family members, get a ring, etc., so we decided Friday would be the “big day.”
The next time David had a period of relative alertness, the team had another conversation with him, with his daughter and wife present. He wanted to do anything possible to remain alive and alert enough to attend the Friday wedding. The team presented a number of options, and David decided to restart his insulin and accept an alternative form of nutrition with the understanding that we would discontinue both immediately after the ceremony. He and his family understood that these strategies may not work, but they wanted to try.
The Wedding Day
I coordinated the wedding, enlisting the help of a retired Air Force chaplain who was a family friend. Staff came in on their day off to help get the patient ready. They showered, shaved, and dressed David in pressed khakis and a starched oxford shirt. He also wore the USMC gold tags my son asked me to give him.
Meanwhile, we decorated the unit’s family room like a chapel. We arranged flowers, candles, and a cake table. We used my iPad to play music chosen by the bride and groom. With the patient and family’s permission, I invited the hospital’s PR photographer to document the day. (He shot their entire wedding — including both posed and candid photos — and gave the disc to the family as a gift.)
When the guests arrived, the staff got David up and into a geri chair and wheeled him into the family room. We arranged his wife’s chair next to him. David was awake and alert throughout the brief ceremony and was able to speak a few intelligible words indicating that he understood what was happening and that he was pleased.
The chaplain positioned the bride and groom directly in front of David’s chair for the exchanging of vows to make sure he could see and hear. David smiled broadly as he watched.
David had asked me the day before if I could get him lime sherbet to eat with the wedding cake. He didn’t end up having any cake, but he ate several bites of sherbet and went to sleep. He remained comfortable, but mostly unresponsive until he died two days after the wedding.
Knowing a patient’s end-of-life care wishes is only one part of understanding their priorities in their final days. We were already honoring David’s wishes, but by continuing the conversation, we also respected his right to change his mind, albeit temporarily. By asking David what mattered most to him, we not only helped him die the way he wanted, but we also helped him live as he wanted until the very end.
Libby Hopkins, RN, is a Clinical Nurse Educator at the Albuquerque New Mexico VA Health Care Systems and a community advocate for advanced health care planning.
Editor’s Note: David and his family gave the VA written consent to share their story publicly.