RELIGIOUS AFFILIATION: “God’s Creation” – per husband
CLINICAL DIAGNOSIS: small cell cancer, metastasized to the brain and lungs, pneumonia
PRESENTING PROBLEM: Advanced Directive Request
I was paged for an Advanced Directive, and was told “the husband is here, and he was a marine for twenty years, and he’s pretty aggressive, so be ready for that”. I wasn’t sure what that meant, or what they were trying to prepare me for exactly.
1. PASTORAL PLANS: My pastoral plans were to explain the advanced directive, and be prepared to leave it with them and come back later if they needed time to talk about things before signing it. I was also curious the warning regarding the husband, and what kind of aggressive he was. As I prayed on the way for help ministering to the patient and in wisdom with the husband, I felt a huge strength fill me and peace just wash over me. I was not scared, and felt specifically to hold back and wait, that I was prepared for this encounter, and to just flow with what unfolded.
2. SITUATION FIRST IMPRESSIONS: When I came to the room, I noticed a different sign for precautions that I had never seen before. It was for transplants, it said, and the warnings were that there could not be fresh flowers in the room and the patient herself had to wear a mask if she leaves the room. The door was open but a curtain drawn around the bed. I foamed in and knocked on the door frame as I entered. I first heard the beeping of machines through the curtain, and then came through to see an elderly woman leaning over in bed. She was wearing a knitted hat, sitting loosely on her head, and she obviously had lost her hair from chemo. She had bruises all over her arms, and when she reached out to shake my hand she was very hot with fever. In the near corner of the room, in the small space between the bed and the window-door, paced an older man that looked very rough. He was wearing a hat, jeans, and a retired marines shirt with a plaid flannel shirt over it.
P=Patient, H=Husband, C=Chaplain
C1: Hello, my name is Emily. I am the Chaplain on call today, and I got a message that you were wanting an advanced directive?
H1: You. Sit there. (Husband’s voice is loud and booming, and he commands me to sit in the nearby chair with the slamming of his hand into the back of the chair, enough to knock the chair towards me.)
C2: (I look from him and his chair to the patient.) Good afternoon, I brought you this paper to look at – where would it be easiest for you for me to be?
P2: (Patient smiled at me, looked at her husband and smirked, and then turned back to me.) You can sit where you like, and now that I know you are not afraid of him, you can stay as long as you like.
H2: Don’t be afraid of me. I’m a marine, and always have been, and always will be. You sit here, so she can see and use this table to sign your papers. Glad you got here so quick-like.
C3: (The chair is between him and the doorway, and the patient was leaning over toward the bed. So I did sit on the edge of the chair to work with the patient at eye level, but would not have if the chair were not between him and the door.) Thank you. I just have these papers you requested, and I can explain them if you like. When you are ready to sign them, I need to get another staff person to sign with me. But I want to be sure you understand the forms and have all your questions answered first.
H3: We have done this before, but she lost the papers. So she just needs to sign them again so the hospital will know what she wants in case something goes wrong.
P4: (Essie interrupts him.) It’s not in case something goes wrong, honey. It’s for when I die. I am going to die, and I want them to just let me go.
H4: Stop it! (He slams his hand on the table.) Stop talking like that! (He looks at me, and points emphatically at her.) Don’t listen to her or this nonsense. She is going to get better, and get out of here, and I am going to take her home, do you understand? She just had a little fall, and it hurt her because she had back surgery awhile back.
P5: Harry. Listen to me. We have to talk about this. I fell because I can’t breathe. I can’t breathe because the cancer is spread to my lungs. They can’t do more chemo. That palliative care team came to talk to us about ideas and options, and this paper is about my last options. (Essie starts to cry.)
H5: Stop crying! Buck up! Buck up and get over this. Buck up! (Husband is yelling at her now.) You’re a snapper, do you hear? A snapper! (Husband turns away from her, and makes a sobbing sound, and blows his nose in a red handkerchief. Patient is also crying still.)
C6: I hear a lot of emotion between you two, and it sounds like this has been a really hard journey – especially lately.
H6: (He turns to me, quieter now.) She just fell.
P6: I passed out.
H7: She got hurt.
P7: I was unconscious, and not breathing.
H8: She had to get checked out.
P8: He called the ambulance, and they admitted me to the hospital.
H8: She had some procedures.
P9: I had a PET Scan and some radiation.
H9: They don’t know what they are going to do next.
P10: They don’t know what else they can do.
H10: We need these papers, though (pointing at my papers), to make sure we have a plan in place for whatever happens next if we need it.
P11: We need these papers, so they can stop trying to fix what can’t be fixed, and to just let me die naturally.
H11: (Husband looks at Essie) Well, no one is going to let you die. (He turns to me again) But we don’t want to keep her body stuck here after she does die, so we want to make sure our wishes are known.
P12: My wishes are to just die naturally. When it’s my time, I just want to go.
H12: Well, that’s later, when it’s time. This is about them being able to not just keep your body alive after you have already gone. But if there is an emergency, they will still take care of you and resuscitate you. We won’t lose you, I will make sure of that.
P13: I don’t want to be resuscitated! (Essie begins to cry.)
H13: What are you talking about it? (He genuinely looks shocked.) If your body has quit, these papers will make sure they let you just go. But if you just have a hard time, they can resuscitate you as many times as you need. If they do it once, and you come back, then we know you needed to be here. If it happens again, and they get you back, then we will know it’s time for you to go, and so they won’t do it again the third time because your body will just decide. (He looks exasperated. She just starts crying again.)
C14: (When both are silent for a moment, I use the opportunity to clarify a few pieces. I explain the difference between “DNR” and an “Advanced Directive”, and do stress the emphasis that the Advanced Directive is explicitly to state the patient’s wishes while she can declare them. I explain the three choices of some, nothing, or everything in each of the three scenarios, and let them look at the paper. Husband continues avoidance behaviors, while patient is trying hard to confront her own dying process and voice her preferences that she knows her husband will have to watch play out.) These are hard things to talk about, for sure, but putting them on paper helps communicate what you want clearly to the care team. So as you decide what you need on these issues, then you don’t have to worry about those pieces anymore and we can talk about other things.
H14: (Husband stills, finally stops his pacing, and turns to his wife quietly.) I know you don’t want to be a vegetable. No one would want that. We have talked about this our whole life, and especially since (niece) was in that accident on Halloween. No one wants to end up like that. So we don’t want you just on machines, but you don’t want to be hungry, right? You want some nutrition, yeah?
P15: I haven’t eaten for weeks. I’m not hungry. I just want to go. (Patient isn’t crying now, just looking at him directly.)
H15: (Husband starts to cry.) I don’t want to let you go. (He reaches for her hand, and they cry together for some time. I am quiet and still, except for when I see them get sniffly and I fetch them some tissues. They are quiet, then, for a long time.)
P16: (Patient speaks softly.) Listen to me. I don’t want to endure anymore. I just want to be with you, and then let go. I don’t want more interventions, or them to break my ribs like you had to do with your cousin waiting on that ambulance that day. It’s my time. This is it. I want to go.
H16: You don’t even want this one, with some help, so you can get nutrition and what your body needs?
P17: My body needs to go.
H17: (Husband makes a goofy grin, then, while wiping her tears with a tissue.) Go? Go where? Go the way of the earth? Or go the way of the Mormons?
P18: (Patient laughs.) Hush. (She turns to me.) Don’t worry about him. He’s just teasing me. I grew up Mormon, and he don’t go to church.
H18: I go to God’s church, out in the fields and the prairies, and conversate with God that way. I don’t think God’s got a problem with that. (He pats his wife’s hands, and she smiles and tosses a tissue at him, and he stands up to stretch his back against the wall.)
C19: (Looking at husband) God worked pretty hard on the Earth, it seems to me, so I am sure He appreciates you appreciating it. I love to be outside, too, and there’s a lot of conversations with God that happen in my garden! (Husband laughs.) (Looking at wife.) Is there a Bishop or an Elder or someone you would like me to call for you?
P19: No, I haven’t been to church in years. He hasn’t ever been. He doesn’t need anybody, and I wouldn’t know who to call. A blessing sure would be nice, though, but I guess it’s too late for that.
H20: If we are talking church now, I am going to work. (Kissed his wife on the top of the head, and tipped his cap to me.)
P20: He’s a truck driver now that he is retired. He won’t be back until Wednesday or Thursday, probably. I think he is worked up about all this because he can’t get off work and he knows one day he will go to work and I will be gone and he won’t know.
C21: Are you concerned about that?
P21: I don’t have anybody. We don’t have children. Our cousins are all gone now, and my one niece died last fall, like we told you, and it’s just been hard, going through this with him gone.
C22: What pieces of not having anybody has been hard for you?
P22: Being alone, for one thing. Him being away and so not being here to see how bad things really are, that’s another thing. He didn’t want to go to church so maybe I shouldn’t have married him, but I did, so now I don’t have my church, either. But I never forgot the things I learned there or how I felt there, so I still pray. I guess that’s not all the way alone.
C23: Being away from church doesn’t mean the church is gone, though. How have you felt the church as a part of you still, or God still with you when you pray or think about those memories of church?
P23: I remember what is true. I know what is true. I remember how I felt for blessings, or that I could always pray and ask for help.
C24: Would you like to pray now? (Patient nodded, and asked me to pray. I prayed for comfort and for her husband’s travels and for help knowing what to do for end of life care. I prayed about knowing we are not alone, using the reference that we know He promised never to leave us or forsake us.)
P24: Thank you.
C25: Anytime. (Patient appeared sleepy, worn out after the visit and emotions of the experience, so I started to excuse myself.) I will be here all day today, so you let me know if there’s anything else we can do for you, okay?
P25: Is it still Sunday?
P26: Is it too late to get Sacrament somehow?
C27: It’s never too late.
P27: I would like that. A blessing, too, if you really can find someone.
C28: I have their number, and we can call them to come see you today.
P28: Thank you so much. Thank you. I don’t feel afraid anymore, and if I am not going to be afraid, then I guess I better get ready. I hope He remembers me! (Patient laughs.)
C29: Remember? He promised, “I will not forget you! See, I have engraved you on the palms of my hands.” (Isaiah 49)
P29: (Patient smiles, wiping her eyes again, and waving me goodbye.)
4. THEOLOGICAL REFLECTIONS: The fact that the patient grew up LDS was a surprise to me, and did not come into play until the very end of the encounter. I never shared with her that I am LDS, until the second visit when the Bishop brought her sacrament and gave a blessing. I wondered at her story, of choosing between her church and her man, and what that must have been like for her. I also never got the story behind their private joke, other than the allusion to the pioneers. It seems like they have a history of banter about it.
5. SOCIOLOGICAL REFLECTIONS: This couple appeared to be lower middle class, based on language use and appearances. I could tell the man had worked very hard his whole life, and could tell she had worked hard to love him well. In a later visit, she shared about her “housekeeping years”, raising her children on a farm while her husband worked the farm and fixed tractors for extra income. She spoke of the struggle to feed her children, trading eggs for other food stuffs, and being isolated out on the farm away from town. I wondered at how those long years prepared her now to be so very alone while dying, as her husband couldn’t afford to be off work to stay with her. She later said he is able to come visit her for two days every ten days, and alluded to her children not visiting her and her sadness about this. We did not get enough time together for her to open up about this yet, but it might be an area I would explore if future visits presented.
6. PSYCHOLOGICAL REFLECTIONS: This couple had a very intense dynamic. There were at times the husband was very forceful and I wondered if she really has a voice in their relationship, or if she wants ones, or how she presents her voice. At first, I even wondered if he was abusive to her. Yet I also saw she stood up to him when it was important to her, and even then did so in a way to bring him to understand her rather than standing up against him. They were able to work their way full circle back to being united again, with him understanding her and her feeling understood.
7. INCLUSIVE REFLECTIONS: I was uncomfortable with the husband at first. I could handle how he treated me, and am already experienced with that dynamic both clinically and now at the VA. But I was very uncomfortable with how he spoke and interacted with his wife, and I was relieved in the end to see she could hold her own. This was interesting because I recently had a case at the VA where a man verbally attacked me for being a woman preacher, and another chaplain felt strongly about coming to my defense. That surprised me at the time, but now I felt it myself with this patient when her husband was being rough verbally. I wondered about her wanting Sacrament after so long of not having it, and wondered at her preparation for receiving it. It was a gentle reminder to me of it being a gift from Heavenly Father, not something I “take” (English).
8. ANALYSIS OF PASTORAL CARE: This interaction felt like another dance to me, a careful one of waiting long enough to see how they worked things out themselves instead of discounting their process by interrupting, and also advocating for the patient and her decisions (because the Advanced Directive is what she wants, not what someone else says). When she did disclose a faith tradition, I tried to follow-up on it as I would any other faith tradition, but I was glad I had already done the work to find which number of what actual person to call for the Sacrament and a blessing. This was done already, though, because of the incident of needing the Catholic priest quickly after that recent death of an infant, and not having the number, so I had gathered the numbers for the ready that night. Now I was glad I had! Since I had a 24 hour shift, I did go back one more time later, the next day, for a third visit before leaving my shift.
9. PASTORAL OPPORTUNITY: I was able to be a present advocate, listening to the couple as they shared and as they moved themselves through grief, without jumping in to do their grief work for them. I was able to contact the Bishop assigned to this hospital to have the Sacrament brought to her. I was able to connect her to God by helping her know she was not forgotten. I also tried to acknowledge her husband’s worship in “God’s creation”, and make sure that his efforts and participation were not discounted just because they were a different style than his wife’s.
10. SPECIFIC ASSISTANCE YOU NEED: I wonder what role does conflict play in helping us move forward in faith? Several of my patients on this particular shift involved families arguing, sometimes loudly, and once security needing to be called. I wondered what “conflict” in me or my family could be moving me forward, and thought of how hard it was to care for my parents before they died – but how much easier the practical pieces of parenting are because of that experience that so prepared me. I later read this day about the idea that sometimes we have to have “setbacks” to be “set up” for progress, that what sometimes feels like a set-up (as in a trick) in life because it is too hard is really something that we need for salvation (like an arrow being pulled back so that it can be propelled forward).