Finding hope

There is a lot of hope in my work.

I know that sounds strange because I work with people who are dying and grieving, but my experience mirrors that old adage that hope is like oxygen: we need it to survive. The concept of hope changes for my patients over time; they go from hoping to get better to hoping to die, comfortably and with dignity. But still, the overwhelming feeling I meet is hope. And while I am inspired and awed by it, witnessing hope in these circumstances can be tricky.

A few years ago I went to see a young patient who was actively dying. I can’t remember her name but if I close my eyes, I can see her face: I am in her apartment, with her husband and her sister; I can see their faces as well. I can see the patient beginning to leave her body; that is, she was physically still with us but her soul (or whatever you want to call it) was not totally there. And I will never forget, while she was breathing in that shallow, erratic way that means death is close, her sister said to me, “Other people get miracles; maybe she’ll get one. Do you think that could happen?”

I’ve met this experience so many times during the six years I’ve worked in hospice: hope crashing into reality. And what is my role then? How do you validate someone’s hope and fears and raw grief while also educating them about what is actually happening? How do you say nope, no miracles today, she’s already leaving us? It would be cruel, in that moment, to say those things but it would also be cruel to lie and say, yes, it’s possible she will sit up and the cancer will be gone and she will be your sister again.

Despite the scene being so vivid in my mind, I can’t remember exactly what I managed to reply. My hope is that it was something like: “I hope that’s what happens; but what we’re seeing makes me think we’re at the end. And I’m so sorry.”

My words are lost to me now, because they aren’t that important. Instead, the lesson of being very still is what has stayed with me. In those moments, when the family is in a kind of chaos, I am always tempted to rush: to meet the family’s anxiety with my own out of some weird empathetic sensibility. Instead, I have trained myself to become as still and quiet as possible, to try to spread calmness through the room, even as I feel afraid to say out loud that there will probably not be a miracle.

I’m writing this today because I have been thinking a lot about hope in the past several months. I often feel a dearth of it when I read too much Twitter or see someone in the Wawa not wearing their mask correctly. I wonder when this will end, when we will get to the other side, when I will be able to hug my friends again. At moments (just moments) I feel hopeless. But my work brings me back, somehow. There is hope to be found even in dying. If that can be true—and I promise, it is, I have seen it—then there must be hope to be found anywhere.

Image by John Towner

Racism, anxiety, and discomfort

This was a difficult subject to tackle; I’ve started and restarted it a few times. It certainly isn’t a deep dive into race relations or cultural competence in therapy. It’s just one experience that I keep turning over in my mind. What follows is the best I can do and I’m afraid it’s still not a perfect evaluation. Still, it is with me and I just have to keep talking about it.

The other day, a doctor gave me a referral for a patient suffering from anxiety and depression. She has a long psych history and mostly needed to be reconnected to care. Simple enough. But when we met and started talking about her increasingly anxious feelings, a lot more came pouring out than I was prepared for.

I want to be respectful of my client’s right to privacy so I’m not going to write the details of what she told me about. The basics are these: she is a young black woman with sons and she struggles with anxiety about how they will be treated in the world. She faces racism daily, in big ways and small. She knows that her sons will face it too, especially as black men. She is afraid to send them on the bus; she is afraid to call the police if she’s been the victim of a crime; she is afraid.

Lots of my clients suffer from anxiety. They tell me about fears they have that keep them up at night, about the pervasive nervousness that is with them all the time. Generally, we focus on utilizing some CBT and a little bit of mindfulness practice. I teach them strategies to examine their thoughts and worries and use their more rational brain. I teach them deep breathing and some basics of mindfulness, telling them that stress can be controlled. But in this case…what can I do when my client’s fears are not irrational? And also, am I the right person to help her?

I’m white. I was raised in an upper-middle class household and I live firmly in the middle class now, with a lot of privilege. There is no way I could totally understand my client’s experiences as a black woman and as a black mother. I validated her feelings, of course; I explored with her how watching the news increases her anxiety, how some people are unaware of or do not believe in the micro aggressions she and her sons experience on a daily basis. But I cannot truly understand those experiences, not at the cellular level that she does. And honestly, I can’t help her examine her fears for irrationality because racism exists.

I referred her to another therapist, because her mental health history demanded a more intensive therapy than I can provide in my current role. But I keep thinking about her. I keep thinking about what it must be like to fear for your children, in a very different way than I fear for mine, because the dangers they face are different than the ones my kids will face. I keep wondering if I could be an effective therapist for her, were my role to provide that kind of long-term therapy. It’s a question I vaguely remember from graduate school about cultural competence and how we work with clients who have cultural differences that we may or may not understand. This woman and I live in the same town; we are both mothers; we are around the same age. And yet, her lived experience is radically different than my own. In short, I can help her but I wonder if the help would lack something essential.

As usual, I end with few answers and more questions. The good news is, I’ll get to see her the next time she visits her primary doctor, so at least I’ll know how she’s doing. I hope she finds the right therapist. And I hope (corny though it may sound) that things keep getting better so her fears become unfounded ones.

Meet them where they are?

I don’t remember if it’s the very first thing you hear in an MSW program, but I do remember hearing it frequently: “meet the client where they are.” I think of it as a chant, said in unison, ad nauseum, because it was said so often. But that’s because it is one of the most important foundations of our work. We cannot force our patients or clients to do what we think they should do; rather, we have to join them where they are, in their addiction, their illness, their family struggle, and help them find a way forward.

The thing is, that can be hard to do sometimes.

The other day I went to a house to do hospice consents. This is a big part of my job: I explain what hospice can provide at home and discuss with the patient and family what their goals of care are and if we can help them meet those goals with hospice. Not everyone I talk to is ready for hospice; some people can’t get over the word itself or there’s one more treatment they want to try. On the flip side, every so often, I enter a home where the patient is already beginning to die. Hospice can help, but it’s a little late in the game. It also adds a layer of complexity to the admission conversation; if I don’t already have a relationship with the family, how can I begin to tell them that their loved one is going to die?

This particular consent signing was one of those late admissions. This patient had been receiving palliative home care and the family was reluctant to start hospice. There were a lot of emails from management about treading lightly, especially because the patient wanted to continue some treatments that were not benefitting her anymore. I walked into the house already a little anxious, feeling the pressure from above to get the paperwork signed by a hesitant family. Then I met the patient and could see very quickly she was nearing the end of her life.

“Meet them where they are” is a fine sentiment. I agree with it whole heartedly. But standing in front of that patient and her husband, talking about hospice at home and continuing medications that were probably not going to help her anymore, I was torn. Someone would have to tell them that she was dying. Not to be cruel or pushy, but because part of our job as hospice workers is to help people prepare for death. And this woman did not have a lot of time left.

But could I be the one to tell them? I had never met this woman before; I’m not a nurse or a doctor. I’ve been doing this for five years and I’m quite confident that I know what dying looks like. But those emails stuck in my mind; this family wasn’t there yet.

And so, I tread lightly. I spoke with the husband about keeping her at home, in a hospital bed, rather than calling 911 when her heart stopped. He agreed to that. I called the nurse and asked her to visit as soon as possible. I made delicate statements like, “it seems like things are changing.” He agreed. When the patient’s son asked me how much time I thought was left, I gently told him I didn’t think it would be long. The look on his face devastated me.

Photo by Nevin Ruttanaboonta on Unsplash

She died a couple of days later, peacefully and at home, after the nurse and another social worker visited to offer the family some support and help them prepare. I think the family was ready, or as ready as anyone ever is. But I keep thinking about them. Should I have been more aggressive? Is there a place in between “meet them where they are” and “tell the hard truth?”

I’m confident that I did my job: I started the conversation that my team members eventually finished. That is, after all, why we work together in a team; these are not one and done conversations. I was still and present; I used silence and held the space so that the family could ask difficult questions. Should I have pushed harder? Said more? When we meet the client where they are, does that mean we shouldn’t push to move them forward?

I suspect the answers to these questions depend on the situation. Still, this is a case that will be on my mind for a while yet. Examining our practice is an important part of our work. I’ll keep turning it over in my mind from time to time, adding it to the other cases I wonder about. What are some of yours?

Learning from early mistakes

I think it’s time to revisit some of the cases I’ve come across that required me to seek supervision. I’m going to start at the very beginning of my hospice journey.

When I first started in hospice, I had four young women patients in a row. They were all mothers; two of them were younger than me. In my personal life, I was about to get married; I was starting a new chapter in my life as these women were dying. It was devastating. I considered that maybe I had made a mistake in taking this job. I talked about it with a lot of people: my manager, the woman who provided my supervision at the time, my preceptor, my dad. Interestingly, my dad gave me the best advice. He said, “Can you stop them from dying?” No, I said. “What can you do?” Nothing! I said. I can just be there. He answered, “That’s right: you can be there with them. Don’t underestimate that.”

Photo by Soroush Karimi on Unsplash

That became the basic foundation of my practice: just being. When I first started though, I maybe took that a bit too literally. I was hesitant to push difficult conversations for fear of saying the wrong thing or shutting down the conversation. In the case that follows, I made a significant error because I was afraid to delve too deep.

Here is the case study (with the patient’s name changed to protect her privacy):

Lily is a 27-year-old hospice patient who has metastatic liver cancer. She has recently transitioned to hospice to broaden care provider assistance at home. She lives with her parents, her brother, her spouse, and her young children. She and her family are Vietnamese and her parents do not speak very good English. She relies on her mother for childcare, as she experiences a lot of pain and fatigue that has impacted her functioning ability. Lily’s spouse struggles to adapt to Lily’s terminal condition and appears angry at Lily’s illness; he complains often about Lily’s lack of ability to maintain the activities she once completed with ease. Lily’s main concern is who will care for her children after her death. Lily states that she knows her prognosis is poor, but she wants to try any new treatment that may become available. She signs an out-of-hospital DNR order but does not tell her family. The social worker works closely with the other members of the team to provide support to Lily but is concerned about counter transference issues due to their similar ages. The agency’s children’s bereavement counselor helps Lily create a video legacy recording for her young children. The social worker encourages Lily to talk to her family about her advanced directive preferences. However, Lily does not tell her family about her DNR. When she becomes unresponsive, the family calls 911. Lily is intubated and after a week, the family decides to withdraw life support.

Now there’s no guarantee the family would not have called 911. Remember, this is a 27-year-old mother of three. Further, there was a significant language barrier and cultural implications. It’s entirely possible that even if I had taken the correct steps of holding a family meeting (with a translator), Lily still would have died in the hospital.

All that being said, I should have done more than just “be.” But I was afraid. Also, I was deeply sad. As I said, I was a newlywed when Lily took a turn for the worse. It terrified me to see someone my age fading away from cancer. I felt guilty and anxious and I let those feelings prevent me from really doing the work. I went to supervision, sure, but I wasn’t totally honest with my supervisor. I was embarrassed, I think, that I hadn’t had a discussion with Lily about the DNR and about whether or not she had told her family about it. I wasn’t using supervision to its full extent and I think my patient and her family suffered because of it.

I presented this case at a social work hospice conference three years ago, in part to make sense of it and in part to honor Lily’s memory. I can’t forget her; she changed my practice. I am both grateful and humbled.