Case 1

Janice, an experienced home care nurse, has been regularly visiting William, age 16, who has severe end-stage Duchenne muscular dystrophy. William's disease was much more aggressive than usual and he had been steadily deteriorating but over the past 8 months, has reached a bit of a plateau. He is not getting better but continues to struggle on, bed bound, on oxygen and inhalers. 

Janice is approached by William and his parents, when she next visits. He is composed and calm, while struggling for breath as usual. 

"I want to die. This is hell. Whenever I get bad, I wake up every 30 mins, day and night, just gasping and sweating. Every time, my O2 sat drops below 70%, I feel like I'm drowning. You can't imagine how horrible this feels."

After a few more gasps from his mask, he continues…

"I want you to talk to Dr Jones. Next time I drop below 70%, I want him just to give me a big shot of morphine to end my suffering."

His family confirms that they have discussed this for some time and at great length. They don't want to see him continue to suffer this way. They, and William, have drawn up the necessary legal papers - all have been signed and notarized.  

Janice replies that she is sure that Dr Jones will see the wisdom of this and that she will approach him to get his agreement. She states that Dr Jones is very wise and experienced, has known William and his family for years so knows how carefully they will have considered this. 

When Janice later approaches Dr Jones, he grimaces and says, "I wondered if it might come to this. They have mentioned on a few occasions that they have been considering the PAD option."

Janice says, "Well they have made a decision. What should I tell them tomorrow?"