The Work of Intrusion

Death is such a private time; it is the only thing we truly do alone. Sure, if we’re lucky, we’re surrounded by people who love us, but the final trip is done solo. I’ve often wondered where the dying are during that in between time: when the body is still here but the soul (or whatever you want to call it) begins to fade away. I guess the answer depends on your own personal belief system.  I’ll spare you mine; it’s private and precious to me but also not the point of this blog post. This post is about feeling like an intruder.

So much of social work is about invading people’s personal space. We ask wildly personal questions of our clients: what kind of sex do you have, and with whom? How much money do you make? What religion do you practice? Where do you want to die? Imagine asking someone those questions in any other setting. I’m a real hit at cocktail parties, let me tell you.

And yet, this is the work: to build rapport and intimacy as quickly as possible so we can help people. It is a skill that we have to cultivate over time, acknowledging our own discomfort and moving through it. I sometimes feel like an intruder in hospice: when I walk into a home and someone is actively dying and I’ve never met the family before, for instance. Who am I, to invade this sacred space? People often come onto hospice very late in their illness—a topic for a whole different post, I can really rant about that one—so we don’t always have the time to provide the quality care that is the goal of hospice: the relationship building, the life review, the exploration of spiritual and existential distress. Often, I walk into a house and the patient is already halfway gone. The body is present but the person is not themselves, exactly. In those moments, I feel like an intruder, a voyeur. What can I do for someone who is mostly gone? What can I do for a family of strangers in their most intimate, private grief? Sometimes I have felt an urge to leave as quickly as possible, to spare everyone the awkwardness of my presence.

And yet, I have been invited to be present; that is the work I’ve agreed to do. That is what we have all agreed to do, as social workers: invite and share vulnerability, create intimacy and trust, sometimes over months and years and sometimes over just minutes. I can tell you that while I love having a patient for a long time—love hearing the stories and meeting all the family members—there is something special and sacred about holding space in the room for a stranger as they exit this mortal plane. I used to want to run out of the room, sure that I was already too late. Now I see the usefulness of my presence; I can be still and quiet and assure the family: you’re doing everything right. Thank you for letting me be here with you. It turns out I am not an intruder after all, but a source of comfort for the journey. Even if it’s only at the very end.

Image by Jose Pereira, Unsplash

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

Who's in charge here?

I never know what I’m walking into when I have a new hospice admission. Likewise, my patients and their families don’t always understand why I’m there. The nurse and the home health aide, even the chaplain, have very clearly defined roles. When I tell people I just want to talk, it can make them nervous.

At that first visit, death doesn’t always come up in the conversation. It’s a delicate balance: building rapport and offering education and being present without pushing too hard on the door to deeper issues. However, sometimes the patient opens the door for me. Take, for instance, the other day: I visited with a new patient who almost immediately wanted to talk about her impending death. She wanted to know how much time she had left (can’t tell you, sorry); how involved she could be in her funeral planning (as involved as you want!); and how it was possible to feel physically ok and somehow still be dying (take that one as a gift, my friend). We had a difficult but very nice conversation and I think I was helpful.

The next day, the nurse called me to tell me that the patient’s sister didn’t want me to talk to the patient about end of life issues. (Imagine me rolling my eyes).

Luckily, the nurse is no shrinking violet; she informed the sister that the patient is alert and oriented times 72 and gets to be a part of her care planning. In fact, the regulations (if you, like me, are a rule-follower) insist upon the patient being involved in her own care.

But families don’t care about the regulations; they care about their loved ones not being sad, or scared, or “losing hope.” I can’t tell you how many times a (well-meaning) family member has said to me, “We don’t want him to know he’s on hospice” or “we didn’t tell her that she’s dying.” (Spoiler alert: people typically know that they’re dying). And truly, I get it: we don’t want the people we love to be afraid or feel sad or suffer. But, as I always remind those family members, we don’t get to make decisions for other people as long as they’re capable of making their own. We can be tactful; we can be kind. But I will not lie to a patient who asks me a direct question. I will not change the subject when a patient wants to talk about her death. It’s easier sometimes, as I tell my patients and their family members, to bear one’s soul to a stranger, if only because they don’t have to be careful. I won’t start crying or tell them it’s going to be ok; they don’t have to protect me the way they want to protect their loved ones.

In my most gracious moments, I can acknowledge that protection is what people like the afore-mentioned sister are after. In my more annoyed moments, I start crabbing about how it’s all about control and who wants it and who has it. Both can be true! What’s important is to focus, once again, on the person we are serving and to (kindly, firmly, lovingly) set boundaries with everyone else. Advocating for patient choice is foundational to this work; what a joy when it is so easily done.

How much time is left?/Questions I don't want to answer

Photo by Uroš Jovičić on Unsplash

Several times a week, a patient or family member asks me this question that immediately stresses me out: “How much time do you think is left?”

The short answer is, I don’t know. The longer answer is still I don’t know but I can add some variables. There are signs that tell us the body is shutting down: changes in breathing, mottling of the hands and feet, a fever, etc. But there’s no exact science to determine how long the dying process can go on. I tell people that I’m wrong as often as I’m right. Still, people want to know.

Usually I answer that question with a question of my own: what would you do differently if you knew how much time was left? Generally, the answer is nothing. Occasionally there are some practical concerns (taking time off work, for instance). But on the whole, this is a question borne of anxiety: what should I say? What should I be doing? There are no magic answers to these questions.

That being said, I did read once that there are only four things you need to say when someone is dying: I’m sorry, I forgive you, I love you, and thank you. Sometimes I tell my families this. I remind them that even if their loved one isn’t answering, they can hear; hearing is the last sense to leave us. But mostly, when faced with this question, I reinforce that everyone is doing everything right, and how much time doesn’t really matter.

This makes me think about all the questions we get asked as social workers that we really don’t want to answer or that we simply can’t answer. Early on in my practice, I was not great at fielding these questions. I so wanted to have an answer to everything that I sometimes forgot to pause and consider my words before I spoke. Sometimes I would answer before I really knew what I was saying because I was so anxious to fill the silence, to reassure the patient or the family, to be the most knowledgeable person in the room. I quickly learned the power and importance of taking a breath before speaking. Sometimes this makes family members nervous and they say, “You can say it, it’s ok, what are you thinking?” Then I have to explain that I’m not trying to hide anything, I just want to give them a thoughtful answer.

I hate not being an expert at something. It’s a flaw of mine. But one thing this job has taught me is that you don’t need an answer to every question. I often consider why I chose this work. Ultimately, I became a social worker to fix problems. But that’s not my role. My role is to guide people on the path and point out the landmarks along the way. I don’t have to have all the answers. Which is a relief, because some questions, like how much time is left, aren’t answerable. Once I got comfortable with that, I stopped trying to be the most knowledgeable person in the room and worked on being the calmest. What our patients and clients really need is someone to be still and hear them. Which honestly, may be what we all need: not an answer, but someone to sit with us and witness and tell us that we are doing the right thing.