Saturday, December 29, 2007

Endings and Beginnings

My hospital shift this week was difficult and emotionally draining, filled with grief: a patient who lost a beloved parent a few months ago, a patient being admitted to the hospital but frantic with worry over a spouse with advanced Alzheimer's, a patient who'd lain down to take a nap and become unresponsive, and whose CT showed disastrous bleeding in the brain.

The first patient was in the ER because of ETOH issues, and was too out of it to have a coherent conversation. I pride myself on being sympathetic even to the most difficult of our alcoholic patients, but at this particular bedside, I got worn down quickly. The patient's professions of love for me alternated with keening howls over the deceased parent, and none of my calming techniques did any good. Because what the patient needed most was probably sleep, I retreated. Over the course of the shift, I watched other staff struggling to keep their tempers with this patient. The grief was real, though, and I wished I could have found some way to offer comfort.

The second patient agonized -- "Who's going to provide the care if I'm here?" -- but then read me the riot act for breaking confidentiality when I talked to our case manager about the situation. "You shouldn't have done that, hon. I don't want social services involved! I hope you'll take this as a lesson!" Flustered, I apologized and went back to the case manager, who said cheerfully, "I forget things very easily. Don't worry about it." Then I went back to the patient, who lectured me for a few more minutes -- very kindly -- but then showed me a series of dog-eared family photographs. "Here we are hiking before the Alzheimer's really set in. I love this picture. This is how I want us to be remembered."

It was a sticky ethical situation. The patient was right that I should have asked permission before talking to the caseworker, but I also suspect that this patient wound up in the hospital at least in part from the stress of caretaking, and that the entire family probably desperately needs services (respite care, if nothing else). The patient was very invested in believing that no one else could care for the spouse, and clearly felt threatened by any offers of help that might prove otherwise; and was so distressed about the hospitalization, I'm guessing, at least in part because it would prove that other people could care for the spouse. A relative in the room told me wearily, "We've been down this road a lot of times," so I have a feeling the same scenario has played out before.

I loved looking at the family photos, but left -- with a promise to come back -- when I overheard something outside about an unresponsive patient being brought in. The charge nurse told me, "They're trying to intubate. I asked the family to go outside, because that's hard to watch. They're probably in the waiting room. Will you go talk to them?"

"If you'll come with me," I said. "Under the circumstances, they're going to panic if the first person they see is a chaplain."

She came with me, and we found the family and led them to the chapel, which is quieter and more private than the waiting room. They were, understandably, very distraught. I prayed with them. Then the case manager, the charge nurse and the doctor came in, and the doctor explained the CT results. "I've never seen someone recover from something like this," he said gently, and we all watched the family dissolve into tears and disbelief.

"This can't be happening," the spouse said, over and over. "This can't be happening." The patient was intubated now, and the family had been invited back to the bedside. We made a slow, mournful procession; the spouse walked slowly, using a cane, but didn't want a wheelchair. "This can't be happening!"

At the bedside, I watched the family cry, kiss the comatose patient, say, "I love you." The spouse was on a cellphone, trying to reach other relatives, and occasionally looked at me pleadingly, struggling for words to explain the medical situation. Narration of test results alternated with self-blame. "If only I'd -- "

"No," one or another of us would say. "There's nothing you could have done. Nothing could have prevented this. It just happened."

"We were going to the doctor today. If we'd gone to the doctor -- "

"It isn't your fault," I said, and shot a help me glance at the nurse who was checking the monitor.

"It's not your fault," the nurse agreed, to my immense relief. "Nobody could have predicted this or stopped it. Not you, not your doctor, not even us if you'd gotten here sooner. It just happened. Things like this happen."

"But why?" None of us could answer. We didn't know.

In the middle of this, a Code Blue came over the intercomm. It was upstairs, in ICU. Normally, I'd have gone, but I knew there was at least one staff chaplain on duty, and I didn't feel like I could leave this family. My shift was almost over, though, and I was exhausted: I had to go home.

I excused myself to go talk to the case manager. Could we get a staff chaplain down in the ER? "I called up there," the case manager said, "but nobody answered."

"They're probably on the code," I said. "I'll go up and see what's happening, because if a staff chaplain isn't there, they may need somebody."

I excused myself, telling the spouse that I was going to look for another chaplain. On my way out of the ER, I glanced back at the room that had held the Alzheimer's spouse. The room was empty: I'd lost the chance to keep the promise I'd made to go back, unless I wanted to go see the patient upstairs. And I was exhausted, and it was almost the end of my shift, and given what had happened, I thought the patient would only feel more betrayed if I wrote a note asking another chaplain to visit.

In CCU, I found a long-faced staff chaplain -- the only one still on duty, it turned out -- standing with a cluster of other staff outside the room, where the curtain had been drawn. The doctor had just called the code. A griefstricken relative was still next to the bed, imploring the patient not to die, even though the patient already had.

The staff chaplain looked as exhausted as I felt. "I hate to dump this on you," I said, but proceeded to dump it anyway, explaining the situation with the intubated patient. "I feel like someone should be with the family, but my shift's almost over. What should I do?"

"Go home," the staff chaplain said promptly. "You've put in your shift. You've done good work." (Ha, I thought.) "Thanks for letting me know about this; tell them I'll be there when I'm done here."

I went back down to the ER and delivered the staff chaplain's message, and the spouse thanked me. And then I went home, exceedingly glad that this was the last shift of my year. Because of travel plans, I won't be there next week or the week after.

As I left the hospital, I tried to remember shifts that had left me feeling as if I'd accomplished something. This was one of the shifts that only made me think, So, like, why exactly am I doing this? Am I helping anybody here? Am I having fun yet? I felt entirely inadequate: "like butter that has been scraped over too much bread," to quote Bilbo Baggins.

But I'll go back, because after three years, I've had enough positive visits to outweigh one awful shift. I'll go back and start a new year, and this week's patients will start their new years, learning how to live in a world rendered alien by loss. It's trite to say that every ending is also a beginning, especially when that beginning is so unwanted. But my hope for all of these patients is that they'll discover good things in that world along with the terrible ones: that in all that darkness, they'll also find friendship, and hope, and love.


  1. Susan, I'm so sorry your shift was full of loss. Especially at this time of year. But I'm glad that they had someone as caring and sensitive as you to be there with them. It would have been horrible if they'd had to face that alone.

    Peace! and Hope!

  2. Susan, my Dear:

    I'm going to get a little pompous. It's a failing. I hope you can forgive me.

    First, of course you did some good. You were present, incarnating the love and compassion of God in Christ. You were up to your earlobes in John 1. I appreciate as much as anyone that it's not an easy place to be, and that we don't get the feedback in that place that might encourage us. That, however, is not our measure. Our measure is how faithfully we do our part, trusting in the God we reflect to bring fulfillment.

    Now, let me say something else. While I agree it might have been more polite to ask the second patient's permission, you were not violating ethics in bringing the patient's needs, and the needs of the patient's loved one, to the attention of the case manager. Even if the patient had said, "Under no circumstances do I want you to share this," your responsibility to the patient is the patient's and loved one's best interests, not their preferences. Since you didn't share that the patient was that explicit, you were not only within rights, but within your responsibilities in pursuing the patient's best interest, and in pursuing the role of the entire team to respond to all the patient's needs.

    Which brings up the second reason you could reasonably and ethically share the information: you don't function alone. You are part of a team, and information you provide to the whole team may well be important for the patient's care. if the patient chose to be noncompliant so as to get home sooner, being home but actually less able to care for the loved one, neither would be well served.

    I've had to address this myself, and to address it with students. Our responsibilities for confidentiality are really quite nuanced within the context of the health care setting. I have been asked (rarely) to hear sacramental confession in the hospital, and in light of that specific request have maintained the seal. For anything less, I don't promise confidentiality until I know the content. There have been times I had to share information precisely because it was important for appropriate care for the patient. It's important to work within the team, and not in isolation.

    I do know what those shifts to do me. I know what it's like for me to be tired, to feel helpless for all my efforts. God bless you and encourage you when you go back; for you certainly go back to do God's work.

  3. Thanks, Lee and Marshall!

    Marshall: Actually, a lot of that occurred to me. When the patient scolded me about breaking confidentiality, I said, "That applies outside the hospital, but here in the department, we work as a team." In fact, if there hadn't been a family member there who knew what the situation was, I would have felt ethically compelled to share the information.

    It's good to hear this affirmed by a "pro," though! Thank you!

  4. David Harmon10:51 AM

    I also suspect that this patient wound up in the hospital at least in part from the stress of caretaking...

    When my paternal grandfather was failing, he almost took Grandma with him that way....

  5. Hi Susan, I agree with Marshall re: the confidentiality issue. I think safety (the safety of the spouse at home) would trump confidentiality anyway. And in this case it sounds as if the patient is keeping a toxic secret. Hang in there. I am working on a post about my last shift, OY!!!!

  6. Hi Susan. Very nice post. I understand how you feel when you are faced with impossible situations. Situations where our intervention won't help and it is difficult to accept that doing nothing maybe the best thing. For the patient with unconsciousness, you could have admitted him in an intensive care and done all heroic measures and separated the loved ones from him at his last moments. You accepted that doing nothing is better and were bold enough to tell that. I think that is where the art of medicine takes over the science of medicine. At the end of the day these kind of decisions only make you feel confused but that is what the patient and his attendees would want. You did a great job -


Note: Only a member of this blog may post a comment.