How To Be Alive And Like It Too

The lower you go down on a trampoline, the higher you go into the air. Perhaps this dynamic of one extreme begetting another is at play in the heating up of opinions on assisted suicide. I think the more that technology allows life to be extended at all costs (literally and figuratively), the less we feel in charge of our final days. Hellish stories abound of health professionals keeping people alive by tortuous procedures who cannot communicate their potential wish to discontinue them. In other words, it is coercion. But assisted suicide can involve coercion as well.

I think fear fuels both extremes. The futile treatments and withholding of pain medications which may shorten life is about the fear of death, whether originating from the one dying or their loved ones. It is an attempt to escape the fear rather than letting the person die. But the wish to legalize assisted suicide stems from the fear of facing the remaining days of a life so dreadful that it would be worse than death.

There is a middle ground despite the vested interests of some institutions and health care professionals to keep it hidden. There is an alternative to actively prolonging life or finding an escape clause in a death ahead of schedule. Rather than work to ban one extreme or the other, I think our efforts should be to make that middle ground so attractive that patients and their families will resort to the extremes less and less. (I feel the same way about abortion. I am not in favor of banning it. Instead, society should make alternatives available and attractive. In both cases, assisted suicide and abortion, I am talking about incentivizing life.)

While not a cure-all so to speak, hospice is that middle ground. How ironic that uninformed individuals think that going on hospice means “giving up.” I never have heard anyone refer to assisted suicide that way. If someone contemplating assisted suicide is reading this, then can you at least “give hospice a try” before going the “nonrefundable” route? See what the nurse can do about pain. See what the social worker and chaplain can do about feelings of guilt and depression regarding emotionally and financially depleted caregivers. See what the whole hospice team can do to join your search for any potentially remaining sources of meaning. Some unexpected reason for living may turn up. As for the other extreme, hospice is the gateway to appropriate pain relief such as morphine that other types of care preclude due to fear of legal consequences, addiction (obviously an irrelevant concern for terminal patients), or ignorance. It is also a safeguard against “treatments” that increase or prolong suffering. Not only are many if not all such treatments not allowed in order for patients to remain on hospice, the hospice team is available to address their or their loved one’s fears behind the desire to pursue such treatments.

As with any fears, the more we lay them bare, the more each of us will restore control of our destiny.

If I Could Be a Car…

“If you could be a car, what kind of car would you be?” I cannot remember who was being asked, but it was one of those NPR radio interviews of some notable actress or writer who was fast enough on her feet to respond, “I’m not sure about that, but I do know what kind of car I wish I had.”

I first started out with a 1999 Toyota Camry during my first years on the job at a hospice. That seemed like an appropriately conservative but reliable choice for all those miles I would have to cover. It was not flashy but nor was it beat-up looking. No one commented on it one way or the other, at least not until I collided with another car and the hood of my own popped open as I espied a tiny flame as the hood sprang open. I sprinted out minus my medical charts and notes. I knew from disaster training that seeing fire means leave at once or you might never be able to leave at all. Sure enough within minutes if that, the now vigorous flame had its abundant offspring all over the vehicle. I had to cajole a medic to drop me off at a train station so I could make the fifty-mile trip home in the crisp November night. One of my husband’s coworkers picked me up at the other end to drive me the remaining three miles, shivering and in shock.

Minus a car as well as the other items, I knew I had to temporarily get a car right away and worry about calmly buying a suitable car later. I decidedly was not in any shape to do any serious car shopping. So I settled for the first used car I could find, which turned out to be a 1994 Mustang, jubilantly blue, sitting for sale at my local gas station. The car, which was sporty enough despite its age to warrant higher insurance, inspired reactions from patients, families and various personnel. I noticed for instance that when I approached a security guard at a gated community in the visitor’s lane, unlike prior occasions, he very carefully checked my work badge before hesitantly waving me on in. There I was, a real hot- roddin’ chaplain, potentially a threat to the premises.

When I visit a patient for the first time, the burden is on me to make the kind of impression that will put her or him at ease about acting her true self with me and talking about what she really wants to talk about. The Mustang did not help in that regard. Once I got past the gate, a family member came out to meet me at the lot and said, “That’s your car?”  It seemed my credentials and/or credibility were now being called into question. I proceeded to gracefully walk into the home as if a gilded carriage had just dropped me off.

And so if I could be a car, how would I look? I immediately think about cars having interiors as well as exteriors. My interior is sturdy and durable but somewhat worn from the toll of life’s trying episodes. Excess baggage clutters the back seats, but I always make room for passengers, even ones with their own cumbersome baggage. The exterior has a brilliant inviting sheen. The headlights search out truth and meaning but their toned-down lights do not glare into anyone’s eyes. Anyone care to try me out and go for a spin?

A First for Buster, Max, Princess and Molly: Pet Blessings

Buster’s latest diary entry: My owner Stacey makes sure my life’s not dull. Yesterday it was a pet costume contest where I had to strut around in a suffocatingly hot Superman outfit. Ugh! Today it was a pet blessing ceremony. As usual, I had begun my fitness routine in a dog run in a city park, but I knew something was up when Stacey trotted on over to the nearby gazebo, where plenty of other doggies were milling around, plus one cat that doggedly remained seated on her owner’s lap. I’m like what’s up, and then some alpha human named Chaplain Daniel started talking and we and all our owners all settled down along the edges of the gazebo. The word that most stood out in my mind in that chap’s introduction was “treats,” so I figured if that was on the agenda it would be worth my while to sit still. The other dogs were just as smart, because they arrived at the same conclusion and didn’t interrupt overly often.

The ceremony was not half bad as human noise making goes, and a guitar in the background made up for some of the “for humans only” type of chatter. But man my ears went on triple alert when I heard later on I could get my very own individualized blessing. That was a doggie of a different color; almost as valuable as a treat–well maybe that’s pushing it. Anyhow, a great big line of dogs formed along with their owners to wait their turn for Daniel’s made-up-on-the-spot blessings. As I waited in line, I swear I couldn’t help overhearing what the other dogs’ issues were. I thought their blessings were gonna be things like, “May your bruised leg get better soon,” or “hope you get frisky again like when you were younger.” Nope. Most of the blessings were about emotional things like, “May your dog lose her timidity and come to enjoy dogs and people more and more.” Or, “Molly has been sad and not sleeping well. May she find her zest for life again and speed along the dog run with new-found joy.”  The blessing I got was pretty lame: try to give Stacey (my owner) more slack. Argh! as Snoopy would have said. I thought the blessing was supposed to be for us, not our owners.

By the way, pets that were absent were part of this deal. I don’t mean just that they were not there, I mean they were gone forever. When Chaplain Dan said, “Bless our cherished pets  who have left this world but not our hearts,” I almost whimpered with sad memories about my parents. The chaplain then paused for people to say the names of their lost pets, and I was astonished at hearing a whole pile of ’em. A cat owner even got up to read a poem in it’s memory, how about that? Later I heard Karen, another chaplain (Sheesh, how many chaplains do you need at one time, anyway?) go over to that lady and mention how often  humans can be so insensitive about other people’s pets dying and act like grieving over them is nonsense. The lady basically replied, “And how!”

Oh, and I almost forgot: the treats, including animal crackers and bone-like strips got 5 stars, according to yours truly.   Yours truly, Buster

(Editor’s note:) The fancy shmansy word for types of grief that society delegitimizes is “disenfranchised grief.” Pet owners, and even fellow pets that lived with a pet who has passed (that’s another story), have every right to grieve for their pets as they need to. Not only that, did you know there’s such a thing as pet hospices? It’s true. They are all over, and two of them are called “Pawsitive Passings” and “Compassionate Care Cat Hospice.” You can see for yourself at the website of the International Association of Animal Hospice and Palliative Care. Their address: http://www.iaahpc.org/

A Contest between Prejudice and the Angel of Death

My husband Steve will do just about anything to obtain a hard copy of the Tuesday science section of the New York Times. If we are at the airport and the Times is sold out, he will search newspapers abandoned in the terminal’s seating areas or left behind in the plane. Now that’s devotion authors would maybe not kill for but do at least one hundred pushups for. Today I am glad to have my copy in hand, because an article about the racism that doctors face reminded me of a related issue I have confronted in hospice care. The main point of the article was that doctors tend to focus on how to avoid being racist, but not enough on how to handle the reverse, when it is the patient who is prejudiced against the doctor.

I may never know when a patient is prejudiced against my gender, race or religion, but I have faced patients who have confessed to me their prejudice about someone else’s race or other characteristic. Unfortunately, this most often has to do with race, but sometimes I get comments about religious groups, gays, the wealthy, and even party affiliation and geographic location. I feel very ill-at-ease during such conversations, but if the patient is unwittingly referring to me, I can be amused by the irony. Oh my, a liberal right under their nose under cover!

Ordinarily, if people disparage minority groups, I speak my mind if I feel physically and emotionally safe doing so. But with hospice patients I have to balance accepting them with all their moral failings versus considering what harm they are doing to myself as well as others they still affect, such as a home health aide of color. Be that as it may, in the face of the demise facing them and the current trials of the disease, those concerns drown out anything I have to say about that anyway. This is no cop out on my part; the times I have tried to voice disagreement I might as well have been speaking an unbreakable code.

I remember when a patient herself, Miriam, expressed her prejudice but at the same time consciously struggled with it. She was an Orthodox Jew, thus she did not recognize the ordination of female rabbis as legitimate. Since I knew beforehand that she was Jewish, I identified myself as a Jewish chaplain as I approached her bed for the first time. At first she was not sure she would or should talk with me, but her need to talk about her beliefs and her final days to a willing listener got the conversation rolling. With nary an Orthodox rabbi in sight, she settled for what she could get. As if in an aside to God she looked at me doubtfully and said, “I guess at this stage in the game it’s alright to have a woman rabbi visit. I’ll give it a try.” While hers was not the most enthusiastic reception to my identity, when it comes to a hospice patient, I will go more than halfway (about 2/3rds of the way give or take). With this help from the Angel of Death to clear a passage for Miriam and I to connect in an authentic way, she proceeded to lighten the burdens on her soul.

An Uncompleted Story (Not This One)

Jenny [I never use real names] was  eager to see me. This was her infrequent chance to dispel the boredom which she sugar-coated with a TV that beamed at her with the superficiality of a smiley face. Now with me there, she chit-chatted as long as she could to prolong my stay. Talking-time was a rationed goodie, because her daughter, son-in-law and grandson were seldom in her bedroom. It was quite a production to help her out of bed, being heavy and largely immobile, so she could not go in search of interaction with them at will, much less seek it outside the house. Whenever I visited her, I took in the sounds and smells of young lives coming from the rest of the house while we sat in the quiet: her daughter clanging a frying pan down on the stove and squeaking open the oven; grandson-friendly smells like fried chicken carousing all about the house, and the explosive noises of a video game alternating with the grandson’s yips of satisfaction upon beating the odds.

The patient and I had been visiting each other for many months, and when she ran out of her own stories to tell me, we figured out that she would love to hear me read detective stories aloud to her, because she found it too hard to read print. We became our very own mini book-discussion group. I would read a few paragraphs to her, then pause, and she would give her opinion of the author, or guess what might happen next. I might offer one theory of who the murderer was, and she might counter with a differing theory. Not only that, she would defend her position. And as at most any discussion group, we would meander off-topic, from complaints about how seldom she had visitors, to a confession that she really shouldn’t be on hospice because the family signed on just to get more free hours for a home health aide to help bathe and dress her. (More on this sort of thing another time, otherwise I myself will be off-topic, one of a writer’s Deadly Sins)

One mystery novel I read from not only had an intricate plot, but also was a parody of mystery novels. The detective overlooked obvious clues for example, while his wife and others gave him advice and picked up on all sorts of clues, both obvious and subtle. To be honest, I have wracked my brain for the name of the author and the book, which had something to do with blackmailing. Maybe one of you will know. At any rate, Jenny always wanted to know what would happen next, and so did I, as I did not peek ahead. But neither of us ever got to the end of the story. One day, before our next scheduled appointment, she had reached her own denouement. Besides missing her, it always has bothered me that she died before she could hear the much-anticipated resolution of the plot. I  had senselessly thought at the time, “How could she die before we finished the book?” Like the uncompleted detective story, death leaves trails of loose ends as well as roads that veer towards untidy beginnings. -Karen B. Kaplan

What is offbeat compassion?

When I told friends, family and Twitter followers I would be starting a blog, they wondered if my anecdotes about people in Act 3 Scene 3 of their lives would be comforting or inspiring. They wondered  (and either hoped or feared) whether I, a hospice chaplain, had a religious agenda.  Hospice after all is a heavy-duty subject. Chaplains after all are, well, chaplains. Despite this, I have foregone any such goal. There are plenty of other books and blogs that already perform that service. Rather, my purpose in all of my writing is to bring readers  close-at-hand to places they are ambivalent about approaching, yet respect their need for space. Rather than perform the distasteful task of selling you a message, I feel my task is to let you see for yourself what hospice patients think about, value, believe, and avoid.

My attitude towards the hospice patients and their families is similar. I am not there to promote anything, though my presence may be of comfort. As a quiet nonjudgmental presence, they have full leeway as to what they want out of my visits, whether it be a listening ear, song, prayer, touch, casual chatter, or even simply just sitting silently with them. So one of my definitions of “offbeat compassion” is making room for persons who call upon us for help and letting them freely sort out for themselves how we can be there for them.

In the coming months, I will blog about anecdotes about the dying and with grievers, or  tell you about my experiences with such groups as a threshold choir (they sing to the dying), my responses to others writing about similar topics to mine, give book reviews, and provide excerpts from my hospice memoir. As this evolves, I look forward to amplifying comments you make and answering questions you may have. I plan to ask you challenging questions too. Who knows, I may give a pop quiz.

Since this is my maiden post, above all I want to thank all of you for venturing with me into this sometimes soothing, sometimes strange, sometimes curious, and sometimes funny ride.