ICU By Default? A Parish Nurse Asks the Question

This is a the story of a parish nurses' encounter with a dying patient, his family, and the ER staff. During a critical time, the parish nurse helps ask the question that allows the family and the staff to follow through on the patient's expressed wishes for end of life care. Specialties Parish Article

ICU By Default? A Parish Nurse Asks the Question

"If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him." James 1:5

The music was loud and surrounded me as I sat in the football stadium turned music venue for a community-wide concert. I felt my phone vibrate in the seat of my canvas arm chair and I glanced down to note a text message from an unfamiliar number, asking me to call. I found a quieter spot and listened as the emergency room nurse told me of a very sick patient, adding, "The sister asked for you by name." Knowing the person involved and his long term health issues, I asked, "Is he dying?" The nurse hesitated a second before answering, "I think so."

I gathered up by things, said quick good byes to friends and family and began the walk to my car. Fifteen minutes later, I pulled back the curtain of the ER treatment room, holding a fresh package of tissue and my pocket Bible in the other hand.

Mr. R laid on the gurney with a neck immobilizer in place. Dried blood was matted in his white hair and seeping onto the sheet below. His face also showed evidence of trauma and a endotracheal tube protruded from his mouth, snaking over to the respirator two feet from the bed. I briefly took this in before reaching over to hug his sister and hold her while her shoulders shook with both sadness and shock. She took one of the tissues I offered and told me the story of how they had gone out to lunch together and then he simply tripped on the curb at his house when they came back. At the time, he appeared dazed but unhurt, having bounced his head hard on the cement. He was able to get up and make his way inside where she brought him an ice pack, got him settled, and left to go to her home, just a few blocks away. She later found out that he made some lucid phone calls to his children and told them how he had hit his head. But two hours later, when she called to check in, he didn't answer the phone. She hurried on over and when she arrived, found that he had somehow fallen again and this time, opened a gash on his head, possibly by hitting the granite counter top in the kitchen. He was on the kitchen floor in a pool of blood, drawn up into a fetal position, arms twisted in the awkward posture indicative of brain damage.

As she dried her tears, we stood around the gurney and prayed. We read a Psalm together and said the Lord's Prayer. After she had a few minutes to gather herself, I asked what the doctor had told her.

"They said he cannot recover from this," she answered. "He has a big bleed in his head." We talked more about what his wishes were and she told me unequivocally that "He would not want anything done to extend his life." Mr. R had been suffering from progressively worsening chronic obstructive pulmonary disease (COPD) and found each day a chore with breathing treatments, oxygen, difficulty sleeping, anxiety. His sister knew he was tired of fighting.

I had also spoken with him about his wishes. Two months before this event, when his sister was gone on an extended vacation, I called to check in and see how he was getting along in her absence. In the course of the conversation, we talked about what he would want if there ever came a time when he couldn't speak for himself. "Nothing. Absolutely nothing," was his firm response.

The ER nurse came in and said, "We have a bed for him in the ICU. He will go up there and you all can stay in the waiting area while they get him settled." I looked over at Mr. R whose choreoathetosis caused almost rhythmic leg movements. I touched his limp, cool hand and then, looking at his sister asked, "Do you think he would want to go to the ICU? Did you get a chance to talk with the doctor about his wishes?" His sister shook her head from side to side and said, "He was very clear about not wanting anything done to extend his life. And I have just talked with both of his children who confirm that we are not to do anything to make this go on."

The nurse looked surprised but said, "Let me get the doctor so you all can have a discussion about this."

While the nurse was gone, I explained what would happen if they extubated her brother. I explained the sedation that would be given and the possibility that he would continue to breathe for a period of time and need to be transferred to a palliative care unit for care until he died, reassuring her that through it all, the doctors and nurses would work hard to make sure that he had the best care possible to minimize suffering.

When the doctor came in, she talked quietly with the patient's sister, ascertaining that his wishes were well known and that the family was also on board. She clarified that no recovery could be expected from such a massive blow to the head and explained that his brain was slowly herniating through the natural opening at the base of the skull. Once the decision was made, she asked that we go into the family waiting area while respiratory therapy came to help take him off the vent.

As we were preparing to leave the area the minister of visitation arrived. We held hands in a circle surrounding Mr. R as he read from a book of prayers, a "Prayer of Release." We stayed together in the waiting area, sharing memories and talking about what had happened until the nurse came back to summon us to the bedside. Mr. R continued to breathe at intervals with prolonged spells of apnea until he finally took his last breath, free to move on from there to begin another life in eternity.

The experience left me with questions and some concerns. I wondered about those times when the parish nurse was not able to be there. Would someone else be able to ask the question about the patient's wishes or would he have simply gone on to the ICU?

Joy Eastridge, RN, BSN, CHPN

(Columnist)

Joy has been a nurse for 35 years, practicing in a variety of settings. Currently, she is a Faith Community Nurse. She enjoys her grandchildren, cooking for crowds and taking long walks.

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Specializes in Peds, Med-Surg, Disaster Nsg, Parish Nsg.

Thanks for this great article, Joy. This is a perfect example of why Parish Nurses fill a special need. Knowing the patient as you did...before he even got to the hospital...gave you a special knowledge of what his wishes were. Thanks for being such a great patient advocate at a critical time when he was no longer to verbalize his desires for end of life care.

Specializes in Pediatrics, developmental disabilities.

Wonderful article...thank so much for sharing.

I am so glad you were there for this patient and family.

Thank you for the work you do.

Specializes in SICU, trauma, neuro.

Rest assured that these conversations do happen in the ICU. :yes: I work in a level 1 trauma center, and we do comfort cares on non-survivable TBIs/spontaneous bleeds all the time. Sometimes if the pt is donor designated or otherwise able, the OPO people come and have a sensitive conversation with the family about donation. Or if the family makes it clear that they would not want all of this done, we consult with palliative care and get a comfort plan in place prior to extubation.

A bed in the ICU doesn't mean that we'll flog them for the next three weeks and then transfer them to a LTC vent unit.

I've never worked in the ED so am not sure if mine does terminal weans/comfort care or not...but here's some thoughts about transferring to the ICU to do it. Our ED is extremely busy -- it's a trauma hospital but also a safety net hospital, so they have all sorts of under-insured and govt insured coming in for non-emergencies. It is noisy, crowded, can have irate pts, and the RNs can be spread very thin. In the ICU, that pt will be in his own room where we can dim the lights, turn off the monitor alarms, and play soft music on the TV's relaxation channel. The pt will at most be sharing his RN with one other pt. We can have lots of family in the room if the pt has a spouse and 8 kids.

now this is not to take away from your article or your role in this situation. You were perfect with this sister, how you explained to her what was happening and what to expect. Absolutely beautiful.

Plus, you started that conversation sooner rather than later; you spared this man what could have been days of q 1-2 hour neuro checks (pinching digits with a hemostat to elicit a response, shining a pen light in his eyes...), subglottic and ETT suctioning, placement of an OG tube and an NJ feeding tube........ You were a hero, and I'm sure his family would agree with me. :nurse:

I just say this to assure you that an ICU bed doesn't have to mean a "life" sentence.

Ten years ago, my family was touched by a parish nurse. My son was born with a VSD and a bicuspid aortic valve; he went into CHF when he was 2 weeks old. (Thankfully he responded to meds and didn't need surgery, although we're looking at an aortic valve replacement at some point.) Anyway, I had put him on our prayer chain, and later that week our parish nurse called me to offer support. She was amazing at answering my husband's questions--better than I was. And it felt so good for me to know she was there for us, and that she had reached out to us...my son and us as a family. His cardiologist is great, his clinic RN is great, his echo tech is great, but "Linda" was there as an RN for our whole family. I am still so grateful to her!

So thank you for what you do for your congregation!

Specializes in Faith Community Nurse (FCN).
Rest assured that these conversations do happen in the ICU. :yes: I work in a level 1 trauma center, and we do comfort cares on non-survivable TBIs/spontaneous bleeds all the time. Sometimes if the pt is donor designated or otherwise able, the OPO people come and have a sensitive conversation with the family about donation. Or if the family makes it clear that they would not want all of this done, we consult with palliative care and get a comfort plan in place prior to extubation.

A bed in the ICU doesn't mean that we'll flog them for the next three weeks and then transfer them to a LTC vent unit.

I've never worked in the ED so am not sure if mine does terminal weans/comfort care or not...but here's some thoughts about transferring to the ICU to do it. Our ED is extremely busy -- it's a trauma hospital but also a safety net hospital, so they have all sorts of under-insured and govt insured coming in for non-emergencies. It is noisy, crowded, can have irate pts, and the RNs can be spread very thin. In the ICU, that pt will be in his own room where we can dim the lights, turn off the monitor alarms, and play soft music on the TV's relaxation channel. The pt will at most be sharing his RN with one other pt. We can have lots of family in the room if the pt has a spouse and 8 kids.

now this is not to take away from your article or your role in this situation. You were perfect with this sister, how you explained to her what was happening and what to expect. Absolutely beautiful.

Plus, you started that conversation sooner rather than later; you spared this man what could have been days of q 1-2 hour neuro checks (pinching digits with a hemostat to elicit a response, shining a pen light in his eyes...), subglottic and ETT suctioning, placement of an OG tube and an NJ feeding tube........ You were a hero, and I'm sure his family would agree with me. :nurse:

I just say this to assure you that an ICU bed doesn't have to mean a "life" sentence.

Ten years ago, my family was touched by a parish nurse. My son was born with a VSD and a bicuspid aortic valve; he went into CHF when he was 2 weeks old. (Thankfully he responded to meds and didn't need surgery, although we're looking at an aortic valve replacement at some point.) Anyway, I had put him on our prayer chain, and later that week our parish nurse called me to offer support. She was amazing at answering my husband's questions--better than I was. And it felt so good for me to know she was there for us, and that she had reached out to us...my son and us as a family. His cardiologist is great, his clinic RN is great, his echo tech is great, but "Linda" was there as an RN for our whole family. I am still so grateful to her!

So thank you for what you do for your congregation!

Dear Here.I.Stand, Thank you for taking time to write such a thorough and kind response. You are so right that the ICU can be a good place to transition to end of life care. As it happened, our ED was rather quiet that night, the pt was in a situation that allowed for privacy for everyone involved. But you bring up some very good points to be considered during crisis times. Thank you for the good work that YOU do. Also, I am glad that you and your family had a good experience with you parish nurse in your time of need.

Specializes in Faith Community Nurse (FCN).
Thanks for this great article, Joy. This is a perfect example of why Parish Nurses fill a special need. Knowing the patient as you did...before he even got to the hospital...gave you a special knowledge of what his wishes were. Thanks for being such a great patient advocate at a critical time when he was no longer to verbalize his desires for end of life care.

Dear tnbutterfly, It is an honor to be able to work and serve in parish nursing. Over time, we have the privilege of getting to know members of our congregation, often having visited them in their home setting. All of this, helps us advocate for them in times of crisis. Joy

I am a hospice nurse and am also in an RN to BSN program. For my capstone I have requested to complete the requirements in a parish nurse program. This article speaks to exactly why I am going this direction. Thank you for sharing.

Specializes in psychiatry, geriatrics.

Your story is heartfelt and I'm sure the patient was better cared for knowing you were there. I guess the bottom line, has to do with expressed wishes r/t advance treatment directives and having friends and family be aware of them. Not sure about the legislation in the U.S. however in Canada it's easily done through a power of attorney for personal care. It can be changed or updated at any time. The client signs a legal document outlining what they want/or do not want done in terms of treatment. It's a hard conversation to have, but in the long run respects the clients wishes and ensures life saving interventions are not initiated unnecessarily. Kudos to you for being a Parish Nurse and for being there for him.

Specializes in Faith Community Nurse (FCN).
I am a hospice nurse and am also in an RN to BSN program. For my capstone I have requested to complete the requirements in a parish nurse program. This article speaks to exactly why I am going this direction. Thank you for sharing.

Hi areensee, I wish you the best in going into Parish Nursing. It has been a huge blessing in my life. It's something new every day, even after 17 years! Joy

Specializes in Faith Community Nurse (FCN).
Your story is heartfelt and I'm sure the patient was better cared for knowing you were there. I guess the bottom line, has to do with expressed wishes r/t advance treatment directives and having friends and family be aware of them. Not sure about the legislation in the U.S. however in Canada it's easily done through a power of attorney for personal care. It can be changed or updated at any time. The client signs a legal document outlining what they want/or do not want done in terms of treatment. It's a hard conversation to have, but in the long run respects the clients wishes and ensures life saving interventions are not initiated unnecessarily. Kudos to you for being a Parish Nurse and for being there for him.

Dear CoCook, Our system works much the same, but of course the problem we encounter is that the conversations sometimes don't happen ahead of time. We struggle as a society with making end of life wishes part of every family's conversation at some point in time. But we are making steps in that direction and it is my hope that programs like Parish Nursing can continue to be a part of that conversation. Best regards, Joy

Specializes in ICU, trauma.

Great article. I work in the ICU and i think absolutely they would receive this same exact care that you provided. Especially in significant brain injuries, the ICU nurses and intensivist docs almost always will bring up this conversation. In fact, we deal with this topic so frequently i am positive they would have had this same treatment if they had just gone to the ICU like you said.