Category: Life (and Death) in General

Hello again.  Last Monday was Memorial Day, and I inadvertently took the day off from the blog.  Instead, in honor of our veterans, we plied our neighbors with beer and cider and burgers.  I don’t believe that any of them were veterans.  In fact, in my personal life, I really don’t know anyone involved in the military.  That doesn’t mean, though, that I don’t have a few thoughts about it.  I actually meant to write this column for Memorial Day, but as I mentioned, I was too busy eating and drinking.  So, I’ll share them now.  And yes, at least some of them have some connection to end of life care, albeit a tenuous one.

So, first off, let’s talk about the fact that I really don’t know anybody involved in the military, at least nobody who has served in last 40 years.  My kids’ school had a poster honoring our veterans, and students and teachers brought in pictures of family members who served or are serving.  There were five pictures, and four of them were of grandfathers (or great-grandfathers) who were in WWII.

So, what’s up with that?

We live in a fairly affluent, fairly liberal, (slightly less) fairly diverse suburb.  I’m sure there are people involved in the military, I just don’t know them.   But my point is that I think it’s very interesting that the men and women who go into the service do not come from all over.  They come from certain parts and pockets of our country.  Joining the armed forces  can provide amazing opportunities that for some people would otherwise be out of their reach.  But, of course, it can also exact excruciating sacrifices.  And not all of our communities are affected equally.

I know that observation isn’t mind-blowing.  But for me, and possibly for you, too, it’s important to remember that wars aren’t just fought on TV.  People come home injured, physically and emotionally, and it affects them and everyone they love and their entire community.  And sometimes they don’t come home at all.  Often, it is the communities that have few resources to spare that are hit the hardest and most often.  For those of us, like me, who are fairly oblivious to those sacrifices, they are hypothetical.  But for many parts of the country, they are anything but.  And it seems very unfair that the burden isn’t shared more evenly.

At least, though, it seems like as a country we have gotten better at supporting our vets, at least attitudinally, even if we don’t support whatever war we are waging at any given time.  I’ve had a couple of Vietnam Veterans as patients lately, and they were seriously traumatized by both their experiences during the war, and the reception they received afterward.  They could never move beyond it.  It’s horribly sad.

And that, of course, brings us to another sad story: our VA system.  Even I, who has a second home under a rock, have heard about the scandals affecting the VA.  I know the VA can do wonderful things.  A fair number of our patients are veterans (usually older ones), and the VA provides them with medical care and nursing homes and burial benefits.  (I’m sure they provide other benefits, too, but that’s what’s relevant for our hospice patients).  However, the men I’ve talked to don’t seem to be very pleased with their experiences.  One of my patients, who can barely move off of his sofa, still troops over to the VA every month or so for tests and medical care.  He waits there all day long, surrounded by patients who are screaming in pain, despite the fact that he made an appointment a month earlier.  I couldn’t tell which was worse for him: traipsing around the hospital all day long when he can barely breathe, or listening to the wails of those worse off than he is.  I had another patient who was counting the days until he had Medicare so that he could stop going to the VA.  He felt that the care that he received there was inadequate, and was hoping to get a second opinion that might give him a second chance.  I don’t know if his care was inadequate or not, but the thought that he might die because he couldn’t get the care that he needed was eating him up inside.

He never made it to Medicare–or back to the VA.  He declined too quickly.  He was only in our program for a week.

These are just anecdotes.  I certainly don’t mean to bash the entire VA system, of which I know very little.  I know it is very large and does a lot of good.  I’ve been involved with some researchers and physicians who work at the VA, and they have all been excellent and dedicated.  It just appears that the system is not meeting the needs of our servicemen and women.  And that….I mean, come on.  These veterans have agreed to give life, limb and soul for our country, no questions asked.  The least–the very least–we can do is guarantee them quality, timely care when they come home. That is the only just and moral response to their sacrifice.

I know no one disagrees with me on that point.  It would just be nice if the system served veterans as well as they deserved to be.  It really is shameful, in the truest sense of the word, that it doesn’t.

*******

Over Easter we drove out-of-state to visit family and on our way home we stopped at a rest stop.  Headed toward the door, I was in the lead, (as always, racing for the bathroom) with my two girls and husband a few steps behind me.  Two men and a woman, all dressed in army fatigues, were approaching the door as well.  We were almost there at about the same time, and one of the guys and I both put our arms out to get the door.

At the last minute, I decided to speed up.

I held the door open for the soldiers  (and my husband and kids, too, of course).

Those of you who know me know that my physical stature is anything but imposing.  My eight year old is almost as tall as I am, and she’s of average height.

The incident was, in a word, awkward.  The troops and my husband looked embarrassed.  Luckily for me, I don’t happen to embarrass easily.   It would have been a perfect social psychology experiment.

“Thank you,” the three people wearing fatigues said to me.

“No, thank you,” I said.

And I meant it.

Over the past few weeks I wrote about the loss of a beloved pet.  As I mentioned in the first post on that topic, the loss of a pet is often a “gateway” loss for children: it can be their first encounter with death.  Talking about death with children can cause a lot of anxiety for adults, and as such I think it warrants its own series.  And so, with no further ado, let’s talk about…(drumroll, please) Talking with Children about Death!

This week I’m going to write about talking with children about death when you have an “unemotional opportunity,” i.e., when nobody has died, or is about to.  The next post or two will be about talking about death when you actually are dealing with a loss.

Before I started working in hospice, my then three-year-old daughter became somewhat consumed with thoughts (and some worries) about death and the afterlife. I don’t happen to know what happens to us when we die, so like any good therapist, I tossed it back to her.  What did she think happened when we died?  It took her a few weeks, but eventually she decided that we eventually came back as new creatures –apparently, she believes in reincarnation.  She put in a request that she and I A) die at the same time, B) be reborn at the same time, as humans, with me once again being her mommy, and C) that I make sure to give her her two favorite teddy bears.  I told her that parents usually hope that their children outlive them, but other than that, it sounded great.  I would love to be her Mommy again, and that, as with most things in life, I couldn’t promise anything, but that I would see what I could do.

She seemed very relieved by all of this, and her concerns about death and the afterlife dissipated.    I think it went pretty well, all things considered, though if  I had it to do over again, I would probably say a little more to reassure her, and break things down in a more concrete way.

So, what, then, should you say to a child who is asking you about death?

What follows is my own take on things, which is gleaned from various resources I’ve read and my own experiences.  There are a lot of good sources of information on this topic.  A nice summary can be found here.  Most of my experience has been with younger children, so that’s what I focus on here.  However, kids of all ages need help understanding and handling death, and how you talk about it obviously depends on the age of the child.  Here’s a nice summary on the developmental stages of children as they relate to death.

So, anyway, here are a few general principles that I hold near and dear:

First, I think it’s good to have these conversations somewhat early and often.  You don’t have to beat them over the head with it, but it’s nice to be able to talk about death when you’re not actually dealing with the death of someone you care about.   Kids are aware of death—they hear about it in conversations, it happens all of the time in nature, and to most mothers in Disney and Shirley Temple movies.  They will probably ask you about it, and that’s a good time to talk about it.  If you act like it’s something they shouldn’t ask you about, then they will view it as something taboo and fearful.  Talking about it without fear or anger will go a long way in helping them to see it as a natural process: a sad one, but not a scary one.

Second, be honest.  Don’t try to gloss things over and use euphemisms.  That can get very confusing for kids (especially young kids).  NEVER SAY THAT THE DECEASED JUST  “WENT TO SLEEP”!!!  Every parent in the universe is hoping that their child will go to sleep tonight.  You do NOT want to have them confuse death with sleep.  It’s good to use concrete terms that are age-appropriate.  With young kids, you can explain death in terms of things that stop happening: e.g., when people die, they stop breathing, they stop eating and growing, their heart stops, etc.

Third, just tell them as much as they are asking.  You don’t need to go into lots of details.  Sometimes, the question of “Where is dear departed Aunt Jane?” can be answered simply by saying she’s in the cemetery, under the ground.

Fourth, it’s okay to say that you don’t know.  When it comes to the afterlife, if you have a religious belief you can share it.  I personally think that it’s nice to say that different people believe different things, but that’s just me.  Of course, the afterlife isn’t the only thing some of us haven’t quite nailed down yet.  A big question that often comes up is: When am I/you/everybody else going to die?  Hopefully, you don’t have the answer to those questions!  The honest answer is usually “I don’t know” (though sometimes we know it will be soon.)  What I tell my kids, who are 8 and 5, is that while everything dies eventually, it usually happens when we are very old AND very sick (making sure to distinguish between a little sick—which happens to all of us somewhat frequently– and VERY sick).  Not always, but usually.  And we can be very hopeful that we will live for a very long time.  You can talk about how your family is careful to take good care of yourselves, and are doing what you can to live for a long, long time.  Unless you have a specific reason to talk about this differently (i.e., someone young is dying or has died, or there has been an accident–stay tuned for next week), I don’t think you need to create worries where they don’t currently exist.

This leads us to my fifth suggestion.   Depending on their age, kids are pretty self-centered.  Young kids especially really want to know how all of this is going to affect them.   I think it’s really important to emphasize that no matter what happens, there will always be someone there to take care of them. Be specific; tell them who that would be: Grandma, Cousin Bob, whoever it is.

Finally, try to be patient and understanding.  Don’t freak out if you kid seems obsessed with death for no apparent reason.  It’s natural (a lot of adults are obsessed with it, too), and if you don’t treat it as something that should be freaked out about, it will probably pass.  Here’s a nice list of books for kids that might help.

Next week, I’ll talk about what to say when death is not just hypothetical.  And, as always, thanks for reading.

Hello again.  Today I’m going to finish up my little series on what a “good death” is (or isn’t).  I’m especially excited about this post because a) I’m going to talk about one of my favorite books, and b) while writing it I am forced to take a break from trying to figure out which summer camps to sign my kids up for. (Why must that be so complicated? And done so far in advance?  We just got more snow, for goodness sake.  Sigh.)

Anyway, last week I wrote about what Ira Byock, MD thought a good death was, and how to achieve that.  In that post I mentioned a string of difficult deaths that I was involved with, and how much I struggled with them.  I won’t go into details, but in the last of those deaths, the family, including the patient, had consistently refused to allow us to even bring up the possibility of her death, even though she was clearly dying.  She was very young, and there was a lot of anger and hope and denial.  At the last minute the family called 911 and she died en-route to the hospital.  I heard about that deaths via voice mail as I drove up to meet a dear friend (B, as a matter of fact) at a spa to celebrate my 40th birthday.  I thought about her death for the rest of the ride up there.  Her death joined me in my “waterfall bath,” my massage, and the steam room.  I kept trying to shove her death out of my head, or at least to keep it from hogging the tub, but it wouldn’t budge.  Not only did it not split the bill, but it didn’t even offer to leave a tip.  (This was my first spa experience.   And O-M-G, that stuff is pricey).

So, there I was, wrapped in a spa-issued fluffy white robe, drinking cucumber-infused water, mulling over her death, and trying to read my latest book club selection, which happened to be Being with Dying by the Buddhist monk Joan Halifax.  (Coincidentally, Ira Byock wrote the introduction).  I’m too cheap to buy books, so I kept trying to not drip on the library copy.  I am guessing I was the only person at the spa that day that was reading it, though I could be wrong.  I admit, a large part of me wanted to reach over and grab a moist copy of People, but I persevered.

I’m glad I did.  It took me a few weeks to get through it, but it saved me from being swallowed by my angst.  Halifax is a medical anthropologist who has spent a great deal of time with the dying.  Her book is about her approach to death as a Buddhist teacher, and is written for the dying, those that care for them, and anyone who might fall into one of those categories in the future (i.e., all of us).  In a nutshell, she posits that there is no such thing as a “good death.”  She talks about having the goal of “radical optimism”: not having expectations for any specific outcome.  According to her, there is no “good” or “bad” death.  She strives to set aside judgment and a sense of “knowing,” but to rather practice “not knowing.” She suggests that we as health care providers leave everything we know in the car before we visit our patients.  We are there to help people along on their journeys, to bear witness, but not to impose our beliefs or expectations on them.  Essentially, “it is what it is.” (I love how ubiquitous that phrase has become.)

What I found especially reassuring was that she feels that denying death, grieving death, defying death, accepting death, liberating death…are all legitimate approaches to death.   She even talks about how some people scream at the very end of life, and how we should reconsider automatically medicating them.  Perhaps they are angry, and they should be allowed to express that anger.

I’m far from an expert on Buddhism, though I have read some about it.  It appeals to me on a lot of levels, and if I had more time and didn’t strive to stay in my pj’s for the entire weekend (yep, I’m in them right now) I would probably pursue it more.  I’m not exactly unique in this.  Buddhism seems to be a bit trendy lately…I see a lot of folks wearing prayer beads, and it’s hard to know if they use them to pray or if it’s more of a fashion statement.   But what I love about Halifax’s book is how accepting it is of everyone’s experience at the end of life.  And as someone who is witness to a variety of different approaches to dying, I find that very reassuring.  Because a lot of people don’t have what a lot of us would deem a “good death.”  And, according to Halifax, that’s okay.

And, I’d agree with her.  After muddling through that series of less-than-ideal deaths, that’s what I came up with.  I now feel like everybody is on their own journey.   We as the hospice team come in at whatever point we come in, and our job is to provide whatever support or assistance that we can.  But the nature of that support is dictated by our patient, and the journey is the patient’s, not ours.  They may be denying their death, they may be angry about their death.  We can bear witness to that struggle.  We need to provide opportunities for them to talk honestly about how they feel.  They may not feel the way that we want them to feel.  Maybe with time they will come to that much-hoped for stage of “acceptance.”  But maybe they won’t.  That is for them to determine.

And, that is for us to accept.

At least, that’s my take on it.  What’s yours?  Don’t worry–I won’t judge you!

And, now to get back to walking that fine line between over-scheduling my children and leaving us with too much unstructured free time.  Ah, the joys of modern parenting…

In my post last week, I wrote about my discomfort with passing judgment on outcomes that can be beyond our control, such as health status and even death.  As Americans (or perhaps just as humans), though, we tend to be judgmental creatures.  I’ve been told by others that I am not particularly judgmental (or was it that I was lacking judgment?  I don’t recall…).  Regardless, I have found myself doing it, judging away.  In hospice we often talk about “good” deaths.  The centenarian who died peacefully surrounded by his family?  A good death.  The almost pathologically independent woman who only required help for the last few hours of her life?  A good death.  I did it last week when describing my paternal grandmother’s death: quiet and peaceful, a good death.

Of course, as I also mentioned last week, when you get into the habit of describing something as “good,” then you are forced to describe other things as not-good; i.e.,  “bad.”  This blog was born of an essay I wrote and circulated to a few close friends and family.  It was basically done as therapy.  I had just been party to several deaths in a row that I felt pretty awful about.  There had been a lot of “denial” (another term I’m not fond of); there were children that had not been well prepared; there had been attempts at heroic medical efforts; death had been found in an ambulance; etc., etc.  I felt that everything that we try to avoid or ameliorate in hospice had occurred, and it had occurred more than once.  And as the social worker to these families I was struggling with what had gone wrong, and what I could or should have done to “fix” it. (“Fixing” things can be a bit of an issue in social work.  I’ll probably write about that some time, too).

So, I wrote all of that out and sent it to a few folks.  I’ll tell you what conclusion I came to next week.  Those were tough deaths, and most of us would be hard pressed to say that they were “good.”  My immediate reaction was that they were the opposite of good.  My feeling was that they were…”bad.”

Were they bad deaths?  Well, perhaps.  My hospice book group recently finished the book Dying Well by the great Ira Byock, MD.   This book is a classic in the field, and I enjoyed it.  Byock is a leading hospice physician, and in the book he shares stories about the patients in the Montana hospice that he started in the 1990’s.  He talks about the idea of “dying well,” which for him means growth and accomplishment during the dying process.  In most of the stories he shared, there is a lot of growth and accomplishment as people head toward death.  They repair relationships, become closer to those they love, grow as people and eventually achieve acceptance of their fate.  The stories are very gratifying.

In his book, Byock talks about how to distill what needs to be accomplished at the end of life.  I thought he had a nice way of eliciting this.  He suggests the following questions:  “If a hurricane came suddenly and you had 15 minutes to live, what would be going through your mind as you lay dying?  What would be left undone?  Is there anything you haven’t done or said to someone important?”  Asking those questions seems like it would go a long way to getting to the heart of the matter, to figuring out what still needs to be done.

Our little hospice book group was somewhat floored by how intimately involved Byock seemed to be with his patients and their families.  His hospice at the time sounds like it was a small one, and it appears that he was quite embedded in those homes.  We have a mid-size hospice, with several MD’s, and while the rest of the team (nurse, social worker, chaplain) might become very involved, it is rare for us to see the MD have that level of involvement.

What actually struck me more than that, however, was how much guidance he provided to these families in terms of how they could (should?) “die well.”  He seems to  have had very strong  ideas of what a good death looked like, and what his patients needed to do to accomplish that.  For starters, relationships needed to be completed, and could be done so by saying “I forgive you”, “Forgive me,” “Thank you” “I love you,” and “Goodbye.”

There doesn’t really seem to be much wrong with that formula, but for me personally, I would be hesitant to insist that people follow it.  He recounted one story where he forced an uninvolved son to tell his dying mother that he loved her.  To a very angry man he said, “You have to realize how all of your anger and venom is a very destructive way to avoid admitting how much you are losing.” (p. 76).  I almost dropped the book when I read that–I have a hard time imagining ever telling a patient that they “have” to realize anything.  However, his pep talk was apparently very effective, and the man ended up “dying well.”

I don’t know.  Maybe I’m not far enough along in my career to insist on such things; perhaps with time and confidence I might find that I have started to tell people what to do (and how to die).  Byock’s also an MD, and…well…they tend to be more comfortable…prescribing things (including, but not limited to, medications).  Far be it for me to criticize the truly great Byock.  His book gave me a lot to think about.  It has inspired me to join my patients in looking at their lives and impending deaths more deeply.  I do that with some patients–some of them are eager to do so, and it’s very rewarding to go there with them.  Others are much more reluctant, and I’m working on getting better at digging a little deeper with them.  And then there are still others…you’d be surprised at how often we in hospice are forbidden by our patients or their families to use the word “death” (or even “hospice”).

I’ve met people who have had good deaths.  But I’ve also been privy to final journeys that do not come even close to Byock’s description of how to “die well.”  Sometimes people don’t have enough time to come to terms with the end of their lives and to make peace with it and those they love.  A lot of people are in hospice for a matter of hours, and there’s little hope that their hospice team is going to be able to do a lot for them during that time, either, regardless of what we suggest (or tell) them to do.  Other people who have more time still never seem to be able to fight their way through their fear or sadness or anger to “die well.”  Maybe they lived their whole lives that way, and they’re not going to change just because they’re dying.  Or maybe they didn’t have the right guidance.  Or maybe it was just too hard.

So what about those people?  What are we to make of their deaths?  I’ll talk more about that next week.  But I’m curious about what you think.  What, for you, is a “good death”? What would you need to do to “die well”? And what does it mean if you don’t manage to do that?

I remember once talking to a woman whose husband was dying (this tends to happen when you work in hospice). He was not, as we say, “going gently into that good night.” He had some form of dementia, and had become mean and demanding and aggressive and miserable.  As a result, he was making her miserable, too. She was so hurt by all of this. “I don’t understand,” she said. “We are at the stage in our lives where we have had a lot of people close to us die. I have had so many friends describe these beautiful scenes toward the end of life, where everybody comes closer together, and there is love and sorrow and peace. There are heartfelt goodbyes. They made dying sound like it was just wonderful. But my husband…all he does is scream at me. Terrible, awful things. What am I doing wrong?”

*******

My last grandparent, my paternal grandmother, died a few years ago.  She was in hospice on the other side of the country.  She was in her mid-90’s and, as they say, “sharp as a tack.”  She was ready to die, and when her time was drawing to an end, she started to slip away.  I happened to fly in to see her on the day she perked back up, and I got to chat with her a bit, telling her I loved her and saying goodbye as she enjoyed the chocolate ice cream she had requested.  My uncle, aunt and I took turns staying with her.  She occasionally had pain which the able hospice team was able to control.  She slipped back into her coma and died in the middle of the night with her youngest son at her side.  Her passing was peaceful: A quiet, dignified end to a quiet, dignified life.  I remember thinking that I hoped to be as lucky in life and in death as she had been.  In my mind, she had a very “good” death.

My maternal grandmother died about ten years earlier than my paternal one.  She had dementia, most likely caused by a series of small strokes. My parents, who worked full-time,  moved her and my grandfather, who was completely bed-bound and unable to communicate due to a massive stroke, into their home and hired a full-time caregiver.  While it worked, it was very stressful (and expensive) for them (I was out-of-state for all of this).  I had been very close to my grandma, who had been both devoted and independent.  She had regressed to a child-like state, and was often confused and distraught.  She could usually only be consoled with sweets (clearly, I get it from both sides) and a stuffed teddy bear.   I remember sitting on the stairs, tears running down my face, as I watched this once proud woman nervously rock back and forth, muttering to her bear.  She died at home, with hospice.  While that sounds nice, her death wasn’t.  She probably suffered a final stroke, and she hemorrhaged to death.  My parents were there with her, and that last scene of terror will haunt them forever.  For us, there was no dignity in her death.  For us, her death was not “good.”

 ********

Back when I was in graduate school in the late 1990’s, the book Successful Aging was published.  It was written by two famous researchers in gerontology, and it distilled years of studies into some practical advice for the rest of us.  We do not have to be tied to our genes, the book promised.  We have control over how we age.  If we do it right, we can “age successfully.”  It was a well-researched, helpful book, and it provided some very good advice.  I don’t remember most of that advice (I’m guessing “regularly stealing the Reese’s peanut butter cups out of your kid’s Halloween stash” wasn’t in there),  but the book continues to stand out in my mind.  What struck me way back then and continues to strike me now is the basic premise of “success.”  Okay, say you do your allotted amount of aerobic exercise and eat lots of Omega 3’s and build good, solid relationships and follow your passions.  When you sail through your 80’s and maybe even your 90’s without heart disease or cancer or dementia you can pat yourself on the back and give yourself a little credit.  You succeeded based on your hard work.  Nice job.

But wait a minute.  If you succeeded, what does it mean when your sister is diagnosed with cancer, or your best friend gets dementia?  They clearly didn’t succeed.  Did they….fail?  And, if you succeeded because you worked hard, did they fail because…they didn’t?

Was it their own fault?

******

This line of thinking crops up at the end of life, too, on different levels.  The hospice movement has come a long way in furthering our acceptance of death as a natural process.  It has helped to erode the notion (still held in some quarters of the medical community) that death is synonymous with failure.  That’s a truly wonderful thing, especially given that we are all going to die (eventually).  In hospice, you often hear the phrase “death with dignity.”  I think that’s a nice idea, and given the choice, I think most of us would prefer to have a dignified death than an undignified one, whatever those two options look like.  We in hospice strive to help people to feel dignified as they reach the end of their lives, to help them on their journey to acceptance and see their lives as a triumph instead of their death as a defeat. To have a “good death.”

But that “death with dignity” phrase always makes me cringe a little, too.  In my mind, it’s a lot like the term “successful aging.”  Because let’s face it:  A lot of deaths don’t look very dignified.  And if we are working toward the ideal of “the good, dignified death,” what does it mean if we don’t have one?  Did we screw up somewhere along the line?  Did our loved ones?  Did our hospice team?  Is it somebody’s fault?  And if so, whose fault is it?

Over the next couple of weeks, I’m going to explore the concept of a “good death” a little more.  Rest assured I haven’t written those posts yet, so if you have thoughts about the topic or what you’d like me to write about, please feel free to share them.  I’m also trying to make these posts a little shorter, as they seem kind of long and I’m guessing it’s hard to find the time to read them.  I didn’t manage to make this one as short as I had hoped to.  If you have thoughts about post-length, too, feel free to share.  And, as always, thanks for reading.

Last week I wrote a little about my thoughts on watching my friend B give birth to a new little girl, and how birth is both similar to, and different than, death. I’m going to continue in that vein here.

In that first post I talked about how there can be beauty in death.  However, as someone (my mother) pointed out, some deaths are not only emotionally heartwrenching, but also very physically painful to both endure and watch (and, at times, very messy).  That, of course, is also true.  Sometime soon–maybe next week–I’m going to write a little about what a “good death” looks like, and if that’s even a valid concept.  For the time being, let me acknowledge that some deaths are not beautiful, on any level.  That being said, some deaths are, which I think is a very comforting thought.

Anyway, on to the topic at hand: birth v. death 😉

This being modern day America, drugs are often involved in both birth and death. Of course, there are always people who prefer to do both without them. I’d say that was more true in birth than in death, but I’m not actually sure that’s the case. The drugs can make you loopy or sedated, of course, and that can definitely alter your experience (see my story from last week). When pain medications are used, comfort is the goal in both cases. We often see families struggle with how much pain medication to give for fear of overly sedating the patient. It is a delicate dance, but I think the dance is pretty similar for birth, too.

The human body is made to endure all of these experiences: being born, giving birth (well, at least females are), and dying. And left to its own devices the body will usually prepare itself for each of them. I think we are probably all familiar with the work the fetus and mother go through–it’s pretty dramatic, the change from a cell to a full-fledged human; the ability of a woman to pass a bowling ball from her cervix. But the body prepares for death, too, when allowed to. As the body shuts down and rejects food and water, the body creates its own pain medication and the dying often seem to be awash in peace. They say that the dying also do lots of internal work as well, preparing for their final journey. If you really want to be amazed by the experiences of the dying, read Final Gifts.  Part of them is here with us and part of them has gone on to their next destination. They are not really still in this world, at least not completely, even if they are technically still alive. While there are certainly exceptions, many times the dying just slip into a coma-like state. Things can be very peaceful, they slow down, and then they are gone. And, as one of you pointed out last week, often times people manage to do it just when everyone has stepped out.  I will write more about that some other time, too.

Both birth and death can be incredibly stressful situations, and they are both, to some extent, beyond our control. There is usually little sleep to be found amid either type of situation, which in itself is stressful. In my opinion, you should never underestimate the power of sleep.  Due to the uncertainty of the process and/or the outcome, in both birth and death people are often struggling to gain control. The labor and delivery nurses at B’s hospital were joking that whenever they saw a woman bring in a “birthing plan” it meant one thing: they would end up with an unplanned C-section (my birthing plan, by the way, consisted of only one thing: Have a baby.  But I got that unplanned C-section anyway). Both situations require a lot of work and help. And, in both situations, all of that stress can cause a lot of discord and meltdowns. In death it is complicated by grief and loss; in birth it is complicated by hormones. I was surprised to find myself talking to my friend and her family in much the same way that I do in hospice: “Everybody is overtired and stressed out, and may not be their best selves right now…it’s natural to try to control things when they seem out of control…just try to go easy on each other…” When I was a new mom, exhausted and sleep deprived from working (unsuccessfully) ’round the clock to increase my milk supply , at one point I had a complete fit because everybody else went to check out the new Target while I stayed at home to nurse.  I was voted “nicest personality” in high school, but I literally screamed at my in-laws.  Yup.  Stress…it’s really something.

Stress can come not just from lack of sleep, but also from the unknown.  From predicting sleep cycles (for both newborns and the terminally ill) to what happens to us after we die; how we are going to live with this new child or how we are going to live without someone we love…well, we just don’t know.  For both newborns and the dying, often times the only constant is change.  Just when you think you have things figured out, it all changes: sometimes for the better, sometimes for the worse.   You can’t plan ahead: the only thing you can be certain of is that at some point it’s going to change again.  There’s that control thing again; the only reassuring part is that if things are bad, at least you will never have to live through that particular day again.

In some ways, it seems like there’s a little more certainty in death.  It’s a bumpy road getting there, of course–I don’t mean to minimize the terrible despair that often goes hand in hand with knowing that death is near.  But, once you are at the point of knowing that it is going to happen, that’s pretty much all that can happen.  Assuming pain is controlled, there really isn’t a “worse case scenario” (though some deaths can be very difficult, as mentioned above).   With birth, there’s very little certainty.  A million things can go wrong.  My friend B, like myself, is not a spring chicken–I think some of her lady parts were described as “geriatric.”  She was all too aware of all of the things that could go wrong, and I think that’s why she wanted me there.  Even though we didn’t talk about it, there was an undercurrent of worry in the room.

B flew through the birth with flying colors. Our worry for her health and the health of her baby were for naught. Of course, we all knew what was going to happen next. As soon as that baby was out, the real work was going to begin. Babies, as it turns out, are a lot easier to take care of when they are the inside of you than when they are on the outside. At the end of life, the physical work comes to an end when the life ends, for the most part. The work of grieving, however, can last for a very long time.

That being said, I’m sure that most of us would prefer being born to dying, either as a witness or a participant.  That’s not a shocker.  Birth is generative: another new life is created.  We end up with this cute little thing in our arms.  With death, someone has left us.  One is a gain, the other is a loss.  They are a package deal, of course: we are all born mortal, and to be born is to eventually die.  Birth is almost always met with happiness, and death almost always with sadness.  We do live on, though.  Our lives may end, but our impact can be immortal.  What starts with the miracle of birth need not be diminished by the miracle of death; it is merely transformed.

Oh, well, so much for me not being sentimental–those last couple of sentences there were pretty mushy.  Sorry about that.

So, what do you think?  Every birth and death experience is completely unique.  Do your experiences gel with mine?  Do I seem way off to you?  Share your thoughts on the comment link below–I’d love to hear them.  And, as always, thanks for reading.

This week and next, I’d like to use this space to share some thoughts about the apparent endpoints of life: birth and death.  I should forewarn you that I’m not an overly sentimental person.  Years ago, I remember my mother rushing to remove a dead bird from the porch, fearing that it would be eaten.  “Why?” I asked — “It’s the circle of life, you know.”  This probably came as no surprise to her, as I had once asked her if I could dissect my parakeet after I found it dead on the bottom of the cage (her answer: “No”).  So it would be hard for me to start gushing about how both the beginning and end of life are miraculous, transcendent experiences (even though I think that they are).  Instead, I’ll just take some time this week and next to comment on some of the similarities and differences that I have noticed.  To dissect them, if you will 🙂

I have a confession to make: I’ve never actually witnessed a death.  I’ve seen people moments before they die, and I have seen them moments afterward.  But I haven’t actually been there during.  I’m far from being a hospice veteran, and I’m sure at some point I will be there when it happens. But even for our nurses, who tend to have much more hands-on time with the patient than the rest of us, it sometimes takes a while before they witness a death.  Because we visit people at their homes, we aren’t there all of the time.  Usually families call us as the patient is starting to enter the dying process. We make sure they are comfortable, and then we leave them to it (unless there is a need for us to stay).  And then the nurse and possibly the social worker or chaplain will come after it’s all over to pronounce the death and provide comfort.

Still, though, given my line of work I have a pretty good idea of what takes place during death, and a very good idea of what happens before and after (which I assume is why you’re bothering to read this).

Up until a few weeks ago, I felt that my knowledge regarding the beginnings of life was pretty deficient, despite having given birth to two children myself.  When you are the one giving birth, you can get pretty distracted.  In my case, our first daughter was born via an unplanned C-section. I was very drugged up, and didn’t know that she was out of me until my husband showed her to me. Apparently, I had given birth. Or, that’s what they told me, anyway. As I said, I felt like my education about the start of life was incomplete.  (In case you’re wondering, daughter #2 was a VBAC–you can look it up–but, still, I couldn’t really see anything).

So, when my dear friend, let’s call her B, was gearing up to deliver her third child and she asked me to be there for her birth, I jumped at the chance.  I was honored to be asked to support her, and I was also excited to get to bear witness to this miraculous event.  I wondered how the beginning of life would compare to what I am now more familiar with: the end of it.  I hoped the experience would somehow lead to another Elton John -inspired blog post title.  As you can see above, it did.

I won’t go into too many details of B’s experience here.  To set the scene, however,  I will say that, fortunately, it went incredibly smoothly.   Everyone was healthy and it went very well.  That baby just flew out of her and it was, in every sense of the word, awesome. Did it seem miraculous?  Absolutely.  So, it was all good, and the next day I got to hold her little girl for over an hour. So ,as far as I’m concerned, it was great.

I love babies.

Anyway, on to the business at hand. Being in the hospital with B was, of course, very different than visiting the dying.  The three of us–her, me, and Daddy– sat around chatting amiably,  looking forward to what was to come.  On my way out to pick up food I got into the elevator with two women who marveled at how much nicer our lobby was than the floor that they were on.  I explained that it was the maternity ward, and they looked at each other and paused.  They were definitely not on the maternity ward, they said slowly.  I was jostled out of my good mood by the realization that our floor was probably the only consistently happy one in the entire hospital.  People only go to the hospital if they are sick or they are pregnant.  Fortunately, we were in the latter category.  The other people on the elevator were not.

Yet while sadness is always present at deaths, you might be surprised at how much happiness can be found there, too.  (Please remember that I am only talking about deaths in hospice–anticipated deaths.  I can’t speak to sudden, unexpected deaths.  Those, I would imagine, are very different).   There can be relief that the suffering has ended.  But often times there is also celebration for the life that the person has lived.  I do tear up in my job, but it might not be for the reasons that one would expect.  I usually cry because I am witnessing such beauty and love (okay, maybe I’m a little sentimental).   I have entered many homes where the patient is simply enveloped in love.  I cannot imagine a better way to end my time on earth than to be comfortable, peaceful, and surrounded by people who adore me.  It really doesn’t seem like it can get better than that.  And when I see those scenes, and I see them often, I cannot express how beautiful they are.  Can a death be as beautiful as a birth?  Well, maybe.  Different, of course.  But still beautiful.

It’s also not usually as messy. We don’t see trauma victims in hospice, and while sometimes our deaths are messy, they aren’t always.  Births are always messy.

Really messy.

Births are also a lot noisier.  First the noise comes from the mother (though my friend B was very quiet and polite), and then it comes from the baby.  I haven’t quite figured out when babies quiet down.  Mine haven’t.

Births are noisy, joyful occasions. Deaths are usually hushed affairs.  Part of that, of course, is because they are often so sad.   They are both very real experiences: at their most basic level, they are the two things that life is made of, and neither event is for the feint of  heart.  But one of the reasons that I love my job is that I now know that with the sadness can also come great beauty.  And that is almost enough to make a gal turn sentimental.

I will probably get even more sentimental as I continue on this topic next week.  Brace yourself.