Magdalena's widespread ovarian cancer had been diagnosed just two months before we met. She'd undergone heroic surgery, but it had not cured her cancer. And she had developed a non-healing abdominal wound that drained constantly Our wound care nurse is pretty experienced with this sort of thing, and she said this was one of the worst she'd ever seen. So Magdalena had spent over a month in the hospital, much of it in ICU, before being transferred to oncology. The surgeons and hospitalists involved in her care told the family they should consider hospice. They would hear nothing of it. "Well, how about palliative care?" they asked. It never works when my specialty is presented like that, as if it were hospice without the H. So naturally they rejected palliative care, too.
It was only when most of the family -- especially her oldest son Miguel, who ran the show -- recognized that she was in terrible pain that they asked if I would come and see her. She couldn't speak above a whisper, her forehead and brow were scrunched up, and she grimaced occasionally as she told me her pain was pretty bad. I looked at what she'd been receiving for pain. She had the right dose but the wrong schedule. I made a minor adjustment, and in an hour her pain was gone. Miguel and the other family members -- children, grandchildren, great-grandchildren -- all thanked me profusely. I took them aside and told them that she was not likely to survive the night.
There's an old saying that God is kind to fools and young doctors. There ought to be one that says God is particularly kind to doctors who are foolish enough to make predictions. The next morning Magdalena was sitting up, speaking in a normal tone, making jokes and thoroughly enjoying her family. "Be grateful for this gift," I told Miguel and some of the grandchildren. Magdalena's family enjoyed a few more days with her before she slipped into unconsciousness and died a peaceful death.
Across the hall, Eric was dealing with the knowledge that his stomach cancer -- very aggressive and very widespread when it had first been discovered three years earlier -- had come roaring back. And so had his pain. The nurses and I struggled for two weeks to get Eric's pain under control. Nothing worked -- not even three separate narcotics, each given in huge doses, along with several other so-called adjunctive medications designed to work in tandem with the pain-killers.
Eric had a young wife, a devoted family, and a deep religious faith that God would cure him. He, too, would hear nothing of hospice. So I offered him what we call palliative sedation. We'd administer medications that were intended to make him unconscious, since that seemed to be the only way to control his terrible pain. Most often, palliative sedation is not discontinued and the patient remains unconscious until death. For Eric I was offering a respite for a day or two; my intention was to stop the drug then and allow him to wake up. It's been reported that some patients awaken from respite sedation with their pain greatly relieved. So we tried it for two days. When the sedative was stopped, Eric had one good day before the cancer pain came roaring back again.
I kept adjusting the doses, tinkering here and there, hoping to get the desired result. Every time I went to see him -- and I was there several times a day -- Eric thanked me and shook my hand. He offered to pray for me, and I told him that many people were praying for him.
Three weeks into the hospitalization, Eric's pain suddenly worsened and then he could not be aroused. His abdomen became distended, his bowel sounds disappeared, and he winced when I pushed on his belly and then let go. He'd clearly had a catastrophic event -- maybe internal bleeding, maybe a hole in his intestine. We had come to the end of the line. Eric's wife wondered aloud about transferring him to a nearby academic center, but she came to understand that the outcome would not change. I strongly recommended restarting the sedative drug, and she and the rest of the family agreed. Eric's last day was spent in the company of many friends and family who prayed and wept at his bedside. I had struggled for three weeks to get him comfortable, and at least for the last twelve hours of his life he was.
Not all suffering is physical, and not all suffering can be relieved. It was easy for me to feel like a success with Magdalena. It was not so easy to avoid feeling like a failure with Eric. Not that Eric, or his wife, or any of his family ever uttered a word of criticism. They seemed to understand that I was doing the best I could. But it was hard for me to look in the mirror each morning and not feel the weight of Eric's unrelieved suffering.
Medicine, like politics, is the art of the possible. In palliative care you never know whether your next patient will be an Eric or a Magdalena. All that you do know is that you have to do what you can.
Across the hall, Eric was dealing with the knowledge that his stomach cancer -- very aggressive and very widespread when it had first been discovered three years earlier -- had come roaring back. And so had his pain. The nurses and I struggled for two weeks to get Eric's pain under control. Nothing worked -- not even three separate narcotics, each given in huge doses, along with several other so-called adjunctive medications designed to work in tandem with the pain-killers.
Eric had a young wife, a devoted family, and a deep religious faith that God would cure him. He, too, would hear nothing of hospice. So I offered him what we call palliative sedation. We'd administer medications that were intended to make him unconscious, since that seemed to be the only way to control his terrible pain. Most often, palliative sedation is not discontinued and the patient remains unconscious until death. For Eric I was offering a respite for a day or two; my intention was to stop the drug then and allow him to wake up. It's been reported that some patients awaken from respite sedation with their pain greatly relieved. So we tried it for two days. When the sedative was stopped, Eric had one good day before the cancer pain came roaring back again.
I kept adjusting the doses, tinkering here and there, hoping to get the desired result. Every time I went to see him -- and I was there several times a day -- Eric thanked me and shook my hand. He offered to pray for me, and I told him that many people were praying for him.
Three weeks into the hospitalization, Eric's pain suddenly worsened and then he could not be aroused. His abdomen became distended, his bowel sounds disappeared, and he winced when I pushed on his belly and then let go. He'd clearly had a catastrophic event -- maybe internal bleeding, maybe a hole in his intestine. We had come to the end of the line. Eric's wife wondered aloud about transferring him to a nearby academic center, but she came to understand that the outcome would not change. I strongly recommended restarting the sedative drug, and she and the rest of the family agreed. Eric's last day was spent in the company of many friends and family who prayed and wept at his bedside. I had struggled for three weeks to get him comfortable, and at least for the last twelve hours of his life he was.
Not all suffering is physical, and not all suffering can be relieved. It was easy for me to feel like a success with Magdalena. It was not so easy to avoid feeling like a failure with Eric. Not that Eric, or his wife, or any of his family ever uttered a word of criticism. They seemed to understand that I was doing the best I could. But it was hard for me to look in the mirror each morning and not feel the weight of Eric's unrelieved suffering.
Medicine, like politics, is the art of the possible. In palliative care you never know whether your next patient will be an Eric or a Magdalena. All that you do know is that you have to do what you can.
Thank you.
ReplyDeleteAgreed, do what you can! Thank you for sharing your post.
ReplyDeleteYou sound like an amazing person. I'm sorry to hear both Magdalena and Eric had to go. I was happy to hear the schedule change for Magdalena did the trick, and even if Eric was unconscious most of the time, I'm happy he prayed and that you still kept trying.
ReplyDeleteMy husband's cancer pain was excruciating and none or the drugs or combo-pain med cocktails seemed to "touch it". In the final 6 weeks I was told that Bill's cancer was causing his abdominal wall to thicken - becoming a vice - ever tightening. As a result, Bill's digestive system was too compromised to metabolize the pain meds. (His mind was affected but not the pain in his abdomen). He and I resided in the hospice facility for the final weeks. My precious husband and I went through weeks & weeks of pain hell. Day AND night - there is no sleep when your body is in such agony. I was shocked that nothing worked. Bill was the sweetest person you'd ever meet. And strong. But the cancer was unbelievable. I am still reeling from it all.
ReplyDeleteSince then, I wondered about a drug induced "comatose state" recommended by some doctors.
** In that case does the patient still feel the pain ....but is unable to communicate?
** One other question..........could you please comment on our experience noted below? Thank you.
About my husband's final 2 days:
Admittedly, I was absolutely exhausted and an emotional mess - but our 2 children (very sane, adult & married) witnessed the following along with me:
Even though Bill was "not right" mentally from everything.... and had had 2 siezures the week before - (from the meds I presume)
24 hrs before his death, he opened his eyes and looked at me. (First time in 8 days).
He said, "What's going on? .... I love you."
Then he looked at the wall at the foot of his bed
and said,
"Look at all those people."
He pointed at the wall and said,
"There's your brother"!
(My brother had died 11 weeks previously).
Then Bill said, "I don't know if I can make it up
all those steps.......
Yes, I guess I can."
Then he looked toward the door to his room and calmly said
"See them over there? They're angels - here for me."
His final words were "Just remember, I will see you again."
Although pain meds had affected his mental state for a couple months, nothing even remotely like this had ever, ever happened. Not at all.
Have you experienced this in your hospice work?
I found his words comforting even in the midst of his nightmarish death. Looking back, I can gain peace from his words. Bill was a devoted Christian. Me too, although after his death, it took me a long time to come limping back to my faith.
But I'm back :)
We do use palliative sedation as a treatment of last resort. As I suggested in the post, as far as we can tell a patient receiving palliative sedation does not experience pain.
ReplyDeleteIt's not uncommon for dying people to report that they are seeing loved ones who have died. And travel metaphors -- talking about catching a train, or even walking up the steps -- are common, too. We could call these things hallucinations, I suppose, but I prefer to think of them as "nearing death awareness" events. (A book called "Final Gifts" might interest you.)
And angels? I have a blog post from August 2009 called "Angel" that you might like.