IMAGINE being an active, apparently healthy 28-year-old man, suddenly sick and told that you are going to die. That is what happened to a patient I will call Max. My challenge was to guide Max's journey by keeping him comfortable, listening to him, addressing his most personal questions and concerns, and helping him to find peace.
I think we can make a difference in our patients' lives, just as they can have an impact on ours. As an example, I would like to share my experience with Max.
I cared for Max in the hospital after he received the devastating diagnosis. When he was frightened, I just listened. When he was in denial and continued to look for a cure, I reassured him that any information he wanted would be available. When he was in pain, I provided his prescribed medication as needed and looked for ways to distract him. I found guided imagery to be a powerful distraction technique (see A brief guide to guided imagery).
Max's companion and true love was his dog, who looked much like the stuffed dog Max kept at his bedside. I created a distraction scenario involving the dogs that we often used several times a day. After Max closed his eyes, we would get the dogs ready. Then we would strap on water bottles, talk about what the weather was like, take a deep breath of fresh air, gaze at the blue sky, decide which park to visit, and head off on our walk. Invariably, Max would relax or even doze off during the journey, with or without medication.
I knew that I had gained Max's trust the day he said, “Tell me what it will be like in the end.” I told him that he would not have any pain—we would make sure of that—that the people he loved would be with him, and that he would be able to hear their voices. I said that he should do whatever was necessary to clear his mind and find peace, like talking to family and friends to complete any unfinished business.
When I mentioned this conversation to a physician, he said, “I'm glad he asked you and not me.” But we should all be prepared to talk to our patients about death; it is our responsibility as caregivers. It takes no special training to speak from the heart.
The next big step in Max's care was deciding where he should go after leaving the hospital. The family discussed hospice and rehab facilities, often when Max was not present. But Max was full of surprises. One day in a strong, determined voice he told me, “I want to go home.”
I vividly remember leaving his room and telling everyone on Max's team about Max's decision. It is a reminder to have our patients participate in decisions, regardless how impossible their request may seem to us.
For Max, going home was clearly the right decision. I applaud Jane, Max's mother, who made it possible for Max to have 24-hour nursing care at home. With their devotion and compassionate care, Jane and Max's brother ensured that he had the best quality of life possible.
Max seemed to rally in his own environment. Visiting him in his home, I was so surprised when he mustered all his energy to get off the couch and walk to the kitchen to get me a drink. I treasure all my visits to his home, where we had time to talk about his life and what he loved to do.
In the hospital, Max had talked about wanting to go to Iceland. I had thought this was a fantasy until I saw the pictures from his yearly visits to Iceland with family and friends. Again I was reminded of how important it is to really listen to our patients.
Max died peacefully in his home, without pain and surrounded by his family.
At the end of his life, Max allowed me into his heart. He moved me with his extraordinary strength. Max lived his life with great dignity, right up to the last smile. He will never be forgotten.
A brief guide to guided imagery1,2
Also known as visualization, guided imagery involves imagining pleasant or soothing sensations or experiences—sights, sounds, smells, movements, settings, and so forth—to prevent or manage pain, anxiety, and other sources of distress. It may be directed by a therapist or other participant, or a patient may practice it alone, with or without assistance from an audio recording. Research suggests that this simple technique can increase feelings of well-being, reduce feelings of depression, shorten the length of post-op hospital stays, and even temporarily boost the immune system.