This verbatim case presentation was an assignment submitted for the course Essentials of Palliative Care Chaplaincy, from the CSU Institute of Palliative Care. At the time, I wondered if it may have been a mistake for me to take this course right at the start of the COVID-19 pandemic in NYC. As is evident in the exchange described below, I was emotionally drained to the point of burnout. However, taking this course also helped me to reconnect with my personal and theological reasons for doing this work in the first place: to be present to the Divine in those who are suffering and to extend compassionate support that is rooted in rigorous professional training and solid theoretical grounding. I received helpful feedback on the case below from my classmates and instructor and would welcome additional discussion in the comments
Chaplain’s name: Meghan Janssen
Pseudonym for pt: Nelly
Pt’s age and gender: 79-year-old female
Reason for encounter: Spiritual Assessment and spiritual support to patient’s daughter, following up from initial Palliative Care Consult
Date of Encounter: 4/14/2020
Length of encounter: 30 minutes
Patient’s diagnosis/reason for admission: Flu-positive and COVID-19 infection with comorbid lewy body dementia, Parkinson’s, and COPD.
Date of Verbatim: 4/15/2020
I. Observations, Self-awareness, Care Plan:
The Patient: Patient is a 79-year-old female from the Bronx who was living in a nursing home prior to her admission. I am unsure of her race because it is not documented in the chart and I have not seen her or her family, but I assume based on her name that she is Caucasian, of Italian descent. She has a prior medical history of Parkinson’s and lewy body dementia. Before entering the nursing home, she was living with her boyfriend and her daughter, “D,” was a caregiver to her. Though she had previously designated her boyfriend as surrogate decisionmaker in her HCP, he has signed that responsibility over to D. Patient also has a son who lives in Las Vegas. He and D are not on speaking terms (she describes him as a “junky”), so the team is providing information to them separately, at their request.
The Chaplain: I have been working from home for the past three weeks and am feeling emotionally exhausted and on the edge of burnout from day after day of making calls to family members who are in crisis because their loved one is dying alone in the hospital from COVID-19. I almost feel as though I don’t have to read the chart anymore before I call because nearly all of the consults we are receiving in Palliative Care right now are so similar, and all family members are wrestling with the helplessness and despair of not being able to be present with and see their loved ones in the hospital. I notice how tired I am and how increasingly reluctant I feel to make yet another call. When the physician fellow requested that I call the patient’s daughter for spiritual support, she indicated that there was a complicated and messy family dynamic, and this adds to my anticipation of this being a very difficult conversation. I take note of these feelings and remind myself that I am here to offer myself, that I may not be my best version of that today, but that a word of comfort and care can go a long way. I take a few deep breaths to center myself before I dial the number in the chart.
Spiritual Care Plan: Initial Spiritual Assessment and spiritual and emotional support to patient’s daughter.
II. Verbatim:
C = Chaplain D = Daughter
*Phone rings*
D1: (A deep, raspy voice answers, a voice instantly recognizable as that of a lifelong smoker) Hello?
C1: Hello, may I speak with D?
D2: This is D. (I can hear noises, it’s sounds like a TV on in the background)
C2: Hello, D, my name is Meghan. I’m calling from Montefiore. This is not urgent; I don’t have any new information. I’m one of the chaplains in the hospital…
D3: Oh, hi! How are you?
C3: (Feeling relieved that she sounds like she knows what a chaplain is and wants to talk to me. Perhaps she is relieved that this call is not regarding news on her mother, which at this point could only be bad news.) …I’m fine, thank you… I’m calling to see how you’re doing and and to be available to support you any way that I can. Is this an okay time for you to talk?
D4: Yeah, I can talk now.
C4: Okay, good. So, as I said, I’m a chaplain, which means I’m here for spiritual support as well as support in general during this difficult time.
D5: Thank you. (Sigh) I don’t know what else to say. Of course I don’t want my mother to suffer. But I just can’t be the one to say, “Disconnect her.” God has to be the one to make that decision, not me. So I’m just praying that God will make her heart stop and she’ll go peacefully and not suffer, you know? I talked to my sponsor about it–she’s a priest–and she said, “D, you have to understand, mechanical ventilation and all that, it’s artificial. It’s not natural. Removing it is just letting nature take its course.” And I get all that. But I just can’t be the one to make that decision.
C5: (Slightly surprised by this immediate girth of information. I am relieved to hear she has already been speaking about it with her sponsor and has already been presented with an argument in favor of extubation. This tells me my role here is not to help her make a decision, but to support her in the decision she has already made.) Hmm, yes. I hear how much you care about your mother and how hard it is to be asked to make these kinds of decisions. I imagine it’s especially hard to do that when she’s in the hospital and you aren’t able to see her.
D6: Yes. So I’m here at home feeling like I’m going crazy. I have the TV on all the time and the news just makes me feel even more crazy. I should probably turn it off, but I just can’t. It’s like I’m sucked into it but it just makes me feel even worse. But I can’t stop watching.
C6: (Feeling concerned for her and also feeling I can relate to this.) Yes, the circumstances that we’re in at this time make everything harder. I can relate to what you’re saying about feeling like I can’t keep myself away from checking the news. There’s something addictive about it. But you’re probably right that limiting it would be healthier.
D7: Yeah. But I just keep thinking about how did this happen to her? I feel so guilty! How did she get COVID? What did they do to her in her nursing home? Or was I the one who gave it to her?
C7: Do you have symptoms?
D8: No, but I was with her at the nursing home last weekend and I was helping her change her diaper. I never do that but I was there and I didn’t feel like waiting for the nurse so I was doing it and I had a mask on but I took it off for a while because it was hard to breathe. I don’t know why I did that. I mean, my face was right next to hers. So I’m wondering, I don’t feel sick or anything myself, but did I have it? Am I the one who gave it to her? Is she in the hospital because of me?
C8: (Feeling helpless to reassure her, because I know that this is possible.) That is a scary thought. One of the scary things about this virus is that it affects people in such different ways, and we could be spreading or contracting it without knowing it. But I’m not sure how much responsibility you can take… (Feeling how weak it sounds as I say this.)
D continues on, now speculating whether her mother is sick because someone in the nursing home “did something to her.” This is also a source of guilt for her because she has often yelled at the nursing home staff for what she perceived as neglecting her mother. “Maybe they did it because of me, I don’t know.” She tells the story of the last time she spoke with her mother on the phone: her mother was confused and believed she had been abandoned on an island and kept telling D, “You drove away, why did you drive away?” She is certain that, if her mother is aware of anything in the hospital right now, that she must feel scared and abandoned and this thought is torturous for D. Her speech turns quickly from one thought to the next and is hard for me to follow. Basically, she sounds like a person in crisis, unable to think straight. In my responses and emotional reflections of what she says, I try to counter this with a calm, gentle voice. I try to be a calming “presence” to her across physical distance. In an attempt to shift the conversation from the present crisis, I try to facilitate a life review:
C9: Could you tell me a little more about your mother? What was she like before she became sick?
P9: Oh, she was always very proper and she would dress and do her hair very proper, perfectly manicured, very dignified. And then when she started developing dementia suddenly she started dressing like a hooker. And I would yell at her because I didn’t understand why she would want to look that way. I went shopping with her and she’d be picking out these trashy things and I would yell at her in the store, “What’s wrong with you? You’re dressing like a hooker!” And then I would feel so terrible for yelling at her like that, but it really bothered me.
C10: (Disappointed that my attempt at life review has circled back to her feelings of guilt and regret. I am feeling stuck in her guilt with her. I try to recognize the feelings that fueled those actions.) Hm. It sounds like it was very distressing and scary to see your mother, who you’d always known as someone so prim and proper, suddenly not acting like herself. (The conversation has been going on for a while now and I feel it is swerving all over the place. I attempt to be more directive.) D, I know I only have a few more minutes for this call and, before I go, I’m wondering what kind of support you have right now for yourself in these difficult circumstances. I know you mentioned earlier that you have a sponsor…
P10: Yes, I have a sponsor. I’m in AA so I have support from that community. When my mother got sick I knew I would have to take care of her so I decided to get clean. At first I didn’t believe she had Parkinson’s, because she wasn’t, like, shaking or anything and I thought that’s what Parkinson’s looks like. And one time she peed in my car and I was screaming at her and then felt horrible about it afterward. I screamed at my mother. I just didn’t believe at first that there was actually something wrong with her. I feel so guilty about that.
C11: Hmm. It sounds like it was difficult to cope with. It sounds like you have some regrets, but you’ve also tried very hard to take the best care of your mother that you can.
P11: I have everything arranged already with the funeral home. I’m just hoping that when she goes they don’t stick her in one of those refrigerated trucks. That would just be the worst thing for me, if they put her in one of those refrigerated trucks.
C12: (I am helpless to reassure her on this one. With so many patients dying of COVID-19, and funeral homes backed up and not picking up bodies for days, our morgue is full and, if her mother dies, she will most likely be put in one of the refrigerated trucks parked next to the hospital for this purpose.) Hmmm. I hear how much you’re trying to do right by her.
P12: Would it be possible for a priest to see her?
C13: Yes. Is your mother Catholic?
P13: Yes, my mother is a very devout Catholic. It would really bring me so much comfort if a priest could go see her and give her Last Rights.
C14: I’ll call the hospital priest, Father F, and ask him to visit her today. Unfortunately, at this time, no priests are allowed to enter the rooms of COVID-positive patients. So he will have to pray from outside the room. But what Father F often does recently is call family members to pray with them over the phone. Would you like him to do that?
P14: Well, he doesn’t have to call me–it’s not for me, it’s for her. Could he call her on her room phone so that she could hear it?
C15: (I feel that this is a reasonable request and am disappointed that I don’t think it will be possible, as the patient is unresponsive and cannot answer her own phone. It will require coordinating with the nurse to answer the phone in the room while the priest calls. I have facilitated this in the recent past for family members to speak to their loved ones who are too sick to answer the phone, but it took a long time to wait for the nurse to gear up and go into the room, and I am doubtful that the priest, who is swamped with calls these days, will have the time to make this happen.) He can definitely go pray for her from outside the room. I don’t know if that will be possible for him to call into the room. But I will give him a call as soon we get off the phone and I will ask him.
P15: Thank you. That would really be a huge comfort for me, if he could do that.
C16: (She has indicated earlier in the conversation a belief in God and prayer, so I ask…) I wonder if I could also offer a prayer for you over the phone, if that is something you would welcome?
P16: Yes, that would be great.
C17: Holy God, I want to lift a prayer for D and for her mother, Ms. Nelly, whom you see in her hospital room right now. We can only imagine what she is experiencing and what she is aware of or thinking about right now, but we know that you are with her and know everything that is on her mind and her heart, and so I pray you went comfort her with your spirit of peace. May every nurse or doctor who comes into her room, however briefly, also carry with them that peace and healing and comfort that she needs. And I pray for a spirit of strength and comfort to be with D at this time, as she is in her apartment waiting to hear updates. Right now there are so many messages of fear and anxiety coming to her from the TV, but I ask that you would send her an alternative message of your strength and provision, that you are holding her up through this. When I hear her talk about her mother I hear how much she cares about her and wants to do right by her, and I am grateful for the way she is advocating for her mother, even from a distance. Thank you for the special relationship that they have and the insight she has into her mother’s feelings and needs. Please bless D in the ways she needs it today. We pray these things, trusting that you listen and you care, that all things are in your hands. In your holy name we pray. Amen.
P17: Amen. Thank you for the prayer.
C18: You’re welcome. Is there any other way I can support you today?
P18: No, if you can just ask the priest to please pray over my mother, that would really make me feel better.
C19: Certainly. I’ll do that right away. Also, I feel we’ve talked about a lot of important and very heavy things today, and I’m wondering if it would be alright if I followed up with you at a later time?
P19: Yes, that would be fine. Anytime.
C20: Alright. God bless you, D. Take care.
P20: Thank you, God bless you, too.
III. Dynamics/Identifications: One way the COVID-19 pandemic has changed my work in palliative spiritual care is that I am, in many ways, going through the same crisis as those I am helping. I do not have a loved one dying in the hospital whom I am unable to be with in person, but I also live with the fear of the very real likelihood that this could happen to me. Like, D, I am pursued by the persistent urge to check the news, as though it will offer something to my feelings of helplessness, but I find it just makes it worse (C6). Particular to this case, I also find myself feeling a great deal of identification with and admiration for people in recovery from addiction. I have known a few recovering alcoholics whom I deeply admired, and with my own family history with plenty of “functional alcoholics” who never sought nor felt the need to seek treatment, I feel respect for those who have demonstrated seriousness about getting clean. But I also know how messy and unwieldy addiction is; it is a topic I still feel uncomfortable engaging in with care receivers.
- Self Evaluation: I attempted to accompany D in her helplessness during this visit, and felt myself experiencing helplessness in my inability to respond to some of her concerns, including her fear that her mother would end up “on one of those refrigerated trucks” (P11). It was in my (virtual) presence with her that I felt most effective. Otherwise, it was hard to feel effective because D was clearly in “crisis mode,” her train of thought and the progress of the conversation being mostly nonlinear. I struggled most of all with how to engage her in her guilt. In a follow-up call, I might try to explore this further, perhaps by inquiring whether her 12-step community has offered any useful tools for dealing with feelings of guilt and regret.
- Ethical/Social Justice Issues: In the 90s, our hospital was a de-facto AIDS hospital. Now it has become a COVID-19 hospital, and several of the providers who have been in the Bronx long enough have noted the similarities they see between that crisis and the present one. But they also note several stark differences: while AIDS was an “equalizing” disease, killing the wealthy and poor indiscriminately, the rate and lethality of COVID-19 is divided along stark geographical and socioeconomic lines. This is especially evident in New York City: while the wealthy in Manhattan shelter in place or escape to their second homes in the countryside, most people in the outer boroughs–especially the Bronx–lack such an option. Most workers here are considered “essential,” and must continue to go to work, or they will starve. Our hospital serves an underserved population, already physically sicker and more vulnerable from the effects of poverty (one outcome of which is addiction). I also live in the Bronx and bear witness to this, and am aware of my own incredible privilege, considered essential because I work in health care, yet capable of conducting my work from the safety of my home.
- Spiritual/Philosophical/Theological Reflection: I feel I could have further explored D’s own spirituality and whether she has resources from AA or her mother’s Catholicism that are guiding her. I assessed that she needed help feeling calm and grounded in this moment of crisis, and wondered if praying for her might help with that, but it was not clear if it did. A theme that was prominent in this conversation, however, was guilt. While I felt helpless in responding to D’s guilt, part of me also admires that she was able to express it so openly. When I consider how I respond to my own regrets, I think I tend to try to hide or forget them, not share them openly with others. And few things hurt more than knowing another person is harmed or disappointed by my actions. In reflecting on this experience, I recall the Lazarus story in the Bible from a slightly different perspective than I have in the past: when Jesus is deeply moved by the accusation of Lazarus’ sister, Mary, “Lord if you had been here, my brother would not have died,” and witnesses the pain and weeping of Mary and the others, Jesus’ response is also to weep (John 11:32-35). Certainly, he ends up raising Lazarus from the dead, but there was a pain and sense of betrayal caused by his initial absence, and this cannot be undone. Perhaps the only possible generative response to the pain of things done that cannot be undone is mourning. Perhaps only then can we move towards acceptance and growth. I’m reminded of Reinhold Neibuhr’s Serenity Prayer, traditionally recited at the end of 12-step meetings: “Grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.”
VII. Requests: I would be curious to know your own experiences or challenges with addressing feelings of guilt and regret with the family members of dying patients.
