Category: Working in hospice

Hi again. As I write this, I’m staring out the window of the library, amazed that it finally looks (and feels) like Spring. Yippie! Here I sit, inside, writing about death. Oh well. I’ve got an hour and a half while the kiddos are at a birthday party, and one has to take the time when one can.

So, over the last few weeks, I’ve written about what I love about working in hospice, big and small, and then what the day-to-day challenges are that I find myself dealing with. What that leaves us with is what you’ve probably been wondering about all along: what it’s like to deal with the dead, dying and bereaved on a regular basis.

People often tell me that my job must be a difficult one, and that they certainly couldn’t do it. I don’t know if they could or they couldn’t, and as I’ve written, it’s not as bad as one might think. But, yes, I’ll admit it. Sometimes it is hard. And yes, even depressing.

I think for me, the bigger challenges come in two main forms: my role in the family, or lack thereof; and the effects of being immersed in sadness on a regular basis.

So, I’ve been working in hospice for a little over three years, and I like to think that I’ve grown in that role over time. As such, that first issue no longer plagues me as it once did. That being said, I have lost some sleep over it in the beginning, and I’m guessing that it will happen again sooner or later.

Here’s the thing about being the hospice social worker. Most people who sign up for hospice do so because they want the nursing visits, the equipment, supplies, meds, etc. They may or may not want a social worker. They may not even have any idea what I do. I am always very aware that I am an invited guest in their home. I may want to join them in their journey, to explore their fears and dreams, to guide them to acceptance and a “good death.”  But that doesn’t mean that the patient or the family has any desire for me to do that.

I spend a lot of time engaged in the delicate dance of trying to meet the patient where they’re at. I actually got into hospice as a way of gaining enough clinical experience to eventually have a private therapy practice. It took me about 30 seconds on the job to realize that there is a big difference between having someone show up in your office to “talk about their issues” and working in hospice. First of all, I am usually asking to see my clients, not the other way around. Some people really want to talk about what this journey is like. And other people want to do anything but.  My job is to try to provide support in whatever way works for them.  That might be having deep heart-felt chats about death.  Or it might be bringing them a hot fudge sundae and trying to find a working remote so they can watch Judge Judy while we don’t talk about death.

That, in itself, is not that hard for me. The problem is when I, or our team, sees glaring problems, and we are powerless to do anything about it. The nurses and I are “mandated reporters,” so if there is an issue of abuse or self-harm then we are required to report it to the authorities (as long as the person is a child or over 60 or unable to make decisions for themselves. Otherwise, they’re kind of on their own). But there are a lot of gray areas. A lot of times the issues surround what some call “denial.” The hospice team sees the writing on the wall, but the patient and/or the family refuses to/can’t see it, and won’t plan for the future, or they try to pursue futile treatments. Sometimes the hospice team has been forbidden to talk about end of life issues, or use the word “death,” or even “hospice.”

Many times I have felt like these families view me as the angel of death hovering over their shoulders. Some people barely tolerate my somewhat subtle, gentle attempts to get them to prepare for the inevitable. Most of the time I think that the only let me keep coming back because I can be pretty sweet and I smile a lot and occasionally bring a sugar-based product. And sometimes I’m funny. Or maybe they’re just too polite to tell me “no.”  (Though, some of them do tell me “no.”)

I don’t mind kind of just hanging out and watching Judge Judy, but when I see people in pain because they refuse to take any medications (or someone refuses to give them any), or when there are young children involved and they have not been adequately prepared, or when I know someone is going to end up calling 911 and try to have a dying person brought back to life and all that is going to happen before they die is that they are going to have their ribs broken, it can be hard to watch. I am a firm believer in patient autonomy, which fits very well with the hospice philosophy. I know that all I can do is meet the patient and her family where they are at, and let them know that they don’t have to go it alone. Where they go on their journey isn’t up to me.

But, still, it can be hard to watch.

So, that’s one challenge.  The other big issue is that yes, death can be beautiful, etc., etc. I’ve written about that before. But I will admit, too, that it can also be sad. Very, very sad (the two aren’t mutually exclusive, either). And, over time, I have noticed that sadness creeping into me, slowly seeping into my soul. Some deaths are bigger losses than others–there are a few of my patients that I got to know very well, and I loved them, and now they’re dead. I miss them. Others I barely even met. But death after death after death adds up. And some of them are horribly tragic. Others not so much. But some of the stories that I’ve heard–and they’re not even always my patients–they make me want to cry. Sometimes I do cry.

And so what do I do with this sadness that seems to be in the very air that I breathe? Well, given that I’m writing a blog about this I obviously don’t try to avoid it or pretend it’s not there.  I’m pretty comfortable sitting with it.  I’ll probably write more about that some other time.   I also do yoga and cuddle with my family and all of our many dogs and cats and watch funny TV shows (though my favorite comedian, Louis C.K., has started to make shows that occasionally make me want to cry, too.  I’m pretty sure he’s a genius.  The Kroll Show is a recent favorite, too, though I’m not sure he’s a genius.  He does crack me up, however, despite my best efforts not to like him at all.). Sometimes I eat too much chocolate. Actually, I often eat too much chocolate. And I feel grateful for the life and health that I have.  (And then, of course, I get nervous that I may be screwing it all up by eating too much chocolate.)

But yes, it can be depressing and hard. I admit it. Not all of the time, of course. But sometimes.

Now, though, it’s time to go back out into the sunshine and pick up the kids and stop thinking about death for a while. Perhaps I’ll find some chocolate to nibble on, too.

Actually, I’m pretty sure I will.

Greetings!  So, the last two weeks, I wrote about things I love about working in hospice, both little, and big.  To make it easy, I’ll just keep going with that formula. So, this week I’ll talk about some of the day-to-day challenges about hospice.  Then, next week, I’ll delve into some of the larger issues.

While previously I wrote about how much I love making home visits, it does pose some challenges, and none of them are very pleasant.  Once again, control raises its ugly head:  we have no control over our patients’ home environments.  And this can cause some issues.  I am far from a neat freak, but some people’s homes are really kind of disgusting.  It’s hard to blame them:  my house is kind of messy now; god knows what it would look like if I were sick or dying.  We in hospice can do what we can to get someone in to clean it a bit, but still.  I remember hearing about a patient who smeared feces all over the place (apparently on purpose).

So, there’s that.

Along with the mess, bugs are sometimes a problem.  Roaches, obviously.  But more worrisome is the constant threat of bedbugs, as they like to hitch rides on friendly hospice workers.  I carry around garbage bags in my trunk for the times when we suspect there might be bedbugs, so I can immediately take off my clothes once I’m home and tie them up tight before I wash them.   “Death with Dignity” might be the official hospice motto, but “Travel Light” is a close second.

Oh, and some of the neighborhoods are not…great.  I love that I work for an urban hospice, as I’ve written before.  The diversity is amazing and wonderful.  But some of the neighborhoods are not safe.  We have a really high murder rate here, and a lot of those statistics are based on what goes on in some of the neighborhoods that we visit.  Depending on where I am, drug deals on the corner are not uncommon.  I always go to these neighborhoods before noon.  Winter is better than summer.  I don’t like the summers.  We obviously try to be safe, and will go with other team members if it seems like there is a safety issue.  If it gets to be too bad, we may not be able to provide care for these families, which is also too bad.  We don’t have a lot of patients who live in these areas, but we do have some.  (I should add here that they often tend to be some of my favorite families.)  There is a hospice license plate available here, but I don’t think any of us have one.  In some people’s minds, hospice =  good drugs, and that is not something you want to advertise.  We never have drugs on us–they are always delivered to the home by a pharmacy–but that’s a hard conversation to have if someone has already made that assumption about you.  So, at times I am on a heightened state of alert.  Nothing’s happened to me, and I certainly hope that nothing will.  But it can be stressful.  If it’s stressful on me, a gal who only enters those areas now and again, I can’t imagine what it is like for people who live there, and deal with that level of fear and uncertainty every day.

As I’ve mentioned before, my coverage area runs the gamut, covering both the bottom and top five percent.  And while I don’t usually worry about my safety with the top five percent, it’s not always easy on that side of town, either.  Expectations tend to be very high, and you run the risk of being treated like the hired help (I guess we sort of are, but no one wants to feel that way, including the hired help.)  Many of these families are lovely, but I do remember once being asked if I provided chauffeur services.  Upon learning that I did not, the family dismissed me, saying that they did not think they needed my assistance.

Here’s another fairly petty job hazard:  Last week I mentioned that sometimes people shower me with praise when they learn that I work in hospice, telling me what a special human being I am.  This is always very heartwarming, of course.  However, it’s sometimes paired with their own experience of hospice.  And this is completely understandable.  It’s just that sometimes I’m not really able to listen to those stories in the way that they deserve to be listened to.  Like when I dashed into the Container Store between patients and stupidly forgot to take off my name tag.  It turns out that the cashier had a family member in our hospice, and shared her story with me.  That was very sweet, but, you know…I had like five minutes, four of which I spent waiting in line to get to her in the first place.  I hate cutting people off when they are sharing their loss, so I end up being late for whatever I’m rushing off to do.

And, at the risk of sounding completely heartless, sometimes I don’t actually want to hear those stories.  Most of the time I do, and I love that people share them with me.  But sometimes….well, I get a lot of death on my job.  Sometimes I just want to hang out with my kids at the park, or drink a cup of tea in peace.

But, you know, there are worse things.

Actually, really the worst thing (of these little problems) is this:  I happen to be someone with a tiny bladder.  I also happen to be someone who drinks quite a lot of liquids, especially in the morning.  You may see where I’m going with this…  I am always looking for a bathroom.  And, as you might understand from my first paragraph, sometimes you don’t want to use your patients’ bathrooms.  And I go through a number of neighborhoods where I don’t want to stop at the McDonald’s to use those bathrooms, either.  So, at times I find myself planning my day to accommodate my frequent potty breaks.  Some people who do home-health just try not to drink anything during the day.  That sounds like that could lead to them needing home-health themselves, but I can see the appeal.  I personally like to stay well-hydrated.  And, as a result, my most pressing concern is not usually meeting the needs of the dying, or any other lofty goal that would warrant my inclusion in the group of “special people” that I am often assumed to belong to.

No, for me, my biggest (little) problem with my job is this: I don’t have a toilet in my car.

Next week: some slightly more profound (though certainly less frequent, and sometimes less urgent) challenges.

As always, thanks for reading.  And, I hope all of you Moms out there had a wonderful Mother’s day.  I know I did.

Hello again.  Last week I wrote about some of the day to day joys that come with working in hospice–at least for my tea-drinking, friendly, introverted self.  Hospice was such a breath of fresh air after working in research, where I sat in a room by myself and stared at a screen all day, talking to no one.  I think I work a lot harder now, but I enjoy it a lot more.  Next week I’ll write some about the challenges that come with my job, big and small.  But last week I said I would write about what it’s like to work with people who are dying.  And so, as promised, here’s my take on it:

When people ask me what I do, I get one of two basic reactions.  One is filled with respect and awe.  “Oh, wow, that’s wonderful,” I hear occasionally.  “My grandfather (parent, sibling, etc.) was in hospice, and it was such a good experience.  It really takes a special person to do that.”  I have to say, I never received such a gratifying response when I told people that I did research.

Then, there is the other reaction.  “Oh,” people sometimes say with a furrowed brow, frowning, taking a step back, their revulsion and discomfort clearly palpable.  “Why would you do that?  That sounds awful.  Isn’t it depressing?”  That is the reaction, incidentally, that I received from my parents and in-laws.  My husband likes to call me the Angel of Death.

Both of those responses point to the same thing: working in hospice is not for everybody.  Are we in hospice “special?”  Well, I suppose so, in some ways.  To make a career in hospice, you need to be comfortable with death, and also comfortable with the idea that you can’t fix everything–i.e., our patients are going to die.  And those seem to be things that not a lot of people are comfortable with.  I think it’s human nature to a) avoid death and b)want to fix things.  I can tell you that I personally a) don’t want to die any time soon, and b) try to fix things all of the time.  But when it comes to death in general, the idea that all of us are going to die at some point, and some of us sooner rather than later, doesn’t bother me.  I’ll probably spend some time in another post trying to figure out why that is.  I also, however, don’t believe that dying is easy, at least not very often.  And, perhaps more importantly, I don’t harbor the illusion that there is much of anything that I can fix around the end of life.  It’s a hard time.  It’s not always hard on the dying, but at the very least it’s usually hard on the family.  It’s hard and it’s sad and sometimes it’s even awful.  I’m not going to fix that.  It just is.  All I can ever hope to do it try to spread a little comfort around, maybe make it a little easier.  Sometimes all I can do is help people feel a little less alone.

That’s the only expectation I go in with.  And when I feel like I’ve helped someone feel a little less alone, then I feel good.  As it turns out, it’s really important to me to have a job where I feel that we do good work, that we spread a little comfort around.  And, most of the time, I feel that way about the work we do in hospice.  So that is incredibly rewarding.

One of the things to bear in mind is that we at hospice come into the picture after a person has already been given a terminal diagnosis.  We were not there when the patient was vibrant and healthy.  We were not there when they went through the often laborious and frustrating process of figuring out what is wrong with them.  We were not there when they held on to the hope that treatment after treatment would save them.  We were not there when they were given the bad news that they only have six months or less to live.  We start out expecting the patient to decline and die.  It is not a shock to us.  We are not trying to prevent it from happening, which is what everyone else had been doing prior to us arriving at their door.  So we start out at a different point, and with different expectations.  We are free from the pain and suffering that occurred previously.  And, perhaps most importantly, we never held onto the hope that the patient would survive.  We are a (relatively) clean slate when we show up, ready to walk with the patient to their death.  I could not be the hospice social worker for my parents, or my spouse, or, god forbid, my child.  I would be too emotionally invested. I would probably be a wreck.  But, I could be yours.

I think all of us in our hospice realize what an honor it is to be with people at the end of their lives.  I know that sounds sappy, but it’s true.  What a privilege it is to be able to be part of such a sacred time.   As I’ve written before, death, like birth, can be very beautiful.  You get to bear witness to the whole range of human emotions.  But underlying almost all of those emotions is love.  It’s so heartening to witness so much love.  It’s awesome, in the traditional sense of the word.  Not depressing, as many people seem to think.

I also don’t find my work to be overwhelmingly depressing because I often have a lot of fun with my patients and their families.  Not everyone who is “dying” or caring for the dying is spending every day wiping away tears, at least not all day, every day.  A lot of our patients are just kind of hanging out.  A lot of them are really fun to talk with .  I have never been much of a “laugher;” I find a lot of things funny, but I was never one to do a lot of laughing.  That is, until I started working in hospice.  Now I laugh quite often.  Not “Ha, ha, you’re dying,” (obviously).  But I often have a really good time with the people I meet.  Just because there is death lurking in the corners does not mean that there isn’t joy and good humor.  Sometimes death even spurs it on.  For example, just the other day one of my patients jokingly asked me if hospice provided bikini waxes.   Getting very serious, I explained that actually, they were mandatory.

(In case you were wondering, they’re not.)

We all laughed at that.  Even me.  Everyday life goes on for my patients and their families, even if it’s not going to go on for some of them much longer.

Perhaps, though, the biggest benefit that I derive from working with our families is a constant sense of gratitude.  I face death all of the time.  I know it’s coming for me at some point, too.  I don’t ever pretend that it’s not.  My 40-year-old, apparently healthy self could get hit by a bus while crossing the street to see my 105-year-old cancer patient.  And by spending my day going around visiting the dying, I cannot help but be grateful for my ability to get in and out of my car, drive around, drink tea, listen to murder mysteries, and then go home to my incredible family.

I know what life looks like without those gifts.

And I’m very thankful that I have them.

So, what is it really like to work in hospice?  And, the ever popular follow-up question: Isn’t it depressing?

I get asked this a fair amount, so I thought I’d spend some time writing about it.  Of course, I can only speak for myself.  I should probably tell you that I’ve been doing it for a little over three years, part-time.   I think that’s important to know, because I write this from the perspective of someone who doesn’t do this all day, every day, year after year after year.  I’m not burned out.  And, as you might guess, I think this is a field in which it is quite possible to get burned out.  If any of you readers have a different perspective that you would like to share, I’m all ears!

So, in general, I will say that I really, really enjoy working in hospice.  And no, in general, it’s not overly depressing.  This week, I’ll write about some of the day-to-day aspects that make working in hospice enjoyable.  Next week, I’ll write about some of the bigger issues in end of life care that make hospice work satisfying.  And then,  I’ll focus on some of what we can euphemistically call “challenges.”
I’m part of the “home team,” so I visit people in their…homes.  I drive around the city and suburbs and go to houses, apartments, and nursing homes.  I love that aspect of my job.   I find it fascinating. Given that I’m a sociologist and always secretly wanted to be a real estate agent, I get a lot of pleasure from seeing people in their home environments (though I will admit that I don’t tend to get that excited about going to nursing homes).  And as I live in a very diverse city, I get to drop in on all sorts of folks.   As a white middle class gal from the ‘burbs, working in hospice has allowed me to intimately experience a wide swath of society that I would never have had access to otherwise.  And I love that, too.

Another logistic perk of being on the home team is that I get to spend a fair amount of time in the car, by myself.  This may not appeal to everybody, but I’ve become quite fond of it.  I’m very much an introvert–quite a friendly one, but an introvert just the same, and having down time in the car to recharge myself (and my phone) between visits has been life changing.  I listen to a lot of audiobooks–usually murder mysteries, actually.  (No, the irony is not lost on me.  Lately I’ve become enamored with the Inspector Gamache series by Louise Penny--I highly recommend it!)  For me, being able to stop at a coffee shop and get a cup of tea, and then drive around to my next visit, by myself, while listening to a good audiobook is pretty close to heavenly.

“Okay,” you might be saying to yourself.  “You get to look into people’s homes and unwind in the car.  Whatever.  What about hanging out with dying people?”

Yes, I’ll get to that, next week.  I like that part a lot.  But I can’t emphasize enough how important the flow of my day is.  While working in hospice is a very special, unique job, it’s still a job.  I happen to have stumbled on a job that really meshes well with my nature and needs.  I get to schedule my own day (usually), and am pretty autonomous, while still having the support of a team.  I can do my charting in my favorite coffee shops.  The ratio of social interaction to alone time is ideal for me.  If you have read the book Quiet, by Susan Cain, you’ll know what I’m talking about. I came into this work after staying at home with my children for several years.  I loved that time, too, but I had essentially no alone time in that gig.  When I don’t get enough alone time, I go a little crazy.  I would have done pretty much anything to get to drive around in the car by myself and listen to a story for grown-ups while drinking tea.

Even hanging out with the dead and the dying.

I had actually been nursing an interest in death and dying for a number of years, but had only read and researched it, not experienced it.  Looking to get more clinical experience, I shadowed a hospice social worker for a day, and discovered that I really enjoyed it.  I realized during that day that the whole purpose of hospice is to provide comfort.  There really isn’t any other ulterior motive.  And that’s a role I’m very comfortable with.  And so, in a nutshell, I drive around, drink tea, and drop in on people to see if I can make their lives a little bit better in some way.

That plays out in a number of ways.  My initial visits with families usually involve a fair amount of hospice education, and getting a sense of what their needs are and what they are going through.  Sometimes the people I meet are on the verge of death.  If that’s the case, I will try to prepare them for what’s coming, answer their questions, and provide what we call a “supportive presence.”  On subsequent visits, I work on building the relationship.  I check in to make sure that they have what they need on in instrumental, practical level: enough caregivers, equipment, etc.,  and spend time getting to know them.  I listen to their stories (which is fascinating), and also work with them on exploring their emotions and feelings at this stage in their lives.

I’m guessing that it’s that last part that makes people ask me if my work is depressing.  That, and that fact that pretty  much all of my patients die.

It’s not, though, at least not most of the time.  Why?  Well, I’ll tell you why.

Next week.

So, stay tuned.  In the mean time, go check out Still Life by Louise Penny.  The narrator on the audiobook is wonderful.  And I’ll bet you anything that by the end of it you’ll be craving a cafe au lait.  (At Starbucks, you have to call it a Misto, otherwise they won’t know what you’re talking about.)  And, as always, thanks for reading!