Thursday, July 29, 2010

What IS it you do?

Being interested in the field of hospice and palliative medicine for a solid 10 years now, there are times when I forget that not everyone knows what I'm talking about when I mention my career. Granted these aren't ever very long times, because what I've found is that, unfortunately, very few people actually DO have an idea of what this field of medicine offers. Usually the immediate question I'm asked when I tell someone what I do is, "what's that?" My immediate instinct is to say, "only the best and coolest field of medicine ever..." But more often I'm able to offer what has almost become my "elevator speech" giving a brief overview of what it means, and what those of us in the field can do for patients, for families, and sometimes as importantly, for other physicians (and all members of health care teams).
Previously I've posted this in an attempt to offer a bit more info.

In a recent issue of The New Yorker, Dr. Atul Gawande, a surgeon and writer, explored the question, "what IS palliative care?" While some of us might argue that he gives a somewhat narrow definition and explanation, still very much focused on the "hospice" side and less so on the ever-developing and expanding true "palliative care" side, at least he gives something. 
If you are reading this and have a background in medicine, chances are you realize how amazing it is that a surgeon would even take on this kind of question, much less write an informative and self-reflecting article about our field. More amazing, he provides, via an explanation provided to him by a hospice nurse, the following near-perfect succinct explanation for what we do:

The difference between standard medical care and hospice is not the difference between treating and doing nothing... The difference was in your priorities. In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now—by performing surgery, providing chemotherapy, putting you in intensive care—for the chance of gaining time later. Hospice deploys nurses, doctors, and social workers to help people with a fatal illness have the fullest possible lives right now. That means focusing on objectives like freedom from pain and discomfort, or maintaining mental awareness for as long as possible, or getting out with family once in a while. Hospice and palliative-care specialists aren’t much concerned about whether that makes people’s lives longer or shorter.
Entire article can be viewed here

The article itself provides stories of several patients and their experiences with palliative medicine and hospice, and also of a patient who did not have these services during her battle with cancer. Dr. Gawande paints a picture for us to look at, situations in which we may find ourselves - both as patients and as doctors - and reflect on where we would likely find ourselves in that tableau. I would encourage you to read the article, and consider it for yourself - where would you find yourself in this story? How would you deal with this situation in your own life, your own practice? Why?

Reflecting on these questions is far from easy, even pushing the border of being a scary and painful. The hard and fast fact, though, is that all of us are going to die. Maybe sooner, maybe later. Maybe quickly, maybe slowly. It might be an event we see forming on the horizon like a summer thunderhead, have time to prepare for, time to take cover, time to gather those things precious to us and keep them safer from the storm. It might, literally, hit you like a Mack truck, you never saw it coming.

Although we don't know how each of us will die, we still have control over aspects of our deaths. More importantly, we have control of the life before the death. Years before, months before, days before, hours before. If you take the time to read Dr. Gawande's article, you'll see examples of the many aspects of control individuals can maintain in regard to their deaths. Think about your own for awhile. Write down your thoughts and potential plans and wishes for how you would like to handle these events.
Medical people, think about how you interact with your patients and their families. Is it different from how you would interact with your own family members? Different from how you would hope to have your physician speak to you, shield you, or expose you?

I've done a bit of my own reflecting and the process continues daily. Every time I see a patient or hear about a patient facing a serious diagnosis,  the question in my mind, "what would I do?" is present. It is a question being asked of my physician self and also my non-physician self. What would I do as the doctor? What would I do as the patient? I hope I never stop asking this question, to either of my selves.

Again, a link to the original article

Friday, July 16, 2010


This is a test post from flickr, a fancy photo sharing thing.

Thursday, July 15, 2010

Parental Idiosyncrasies

As I hope any readers of my blog(s) would know by now, I am embarking on my career in hospice and palliative medicine. It is an area I have been interested in for many years, and my particular passion is in the realm of pediatric palliative medicine. No, I'm not crazy.
Given this area of interest, during residency training I tried as much as possible to have exposure to palliative care experiences and to find out more and more about the role of palliative care in pediatrics. During my behavioral and developmental rotation, my academic project and final presentation focused on "Children and Death Concepts." Since kids are not simply "little adults," the way they understand and process the circumstances and events of death and dying - whether it's a pet, a grandparent, a parent, or their own death - depends on the child's age, prior experiences, and what they are simply able to comprehend based on their developmental level.
side note: what I found in my research was that, even though children are supposed to progress through various stages of development and eventually form a "mature" or complete concept and understanding of death, there are many adults I have worked with who are still very much in "immature" phases of their ability to comprehend death and mortality - something I think is an area ripe for discussion on the palliative care world
So, having this knowledge about children and the way they do or do not understand death and dying has recently come into play with something so very unrelated to death and it got me thinking about the effect that my job and my life are going to have on my own child. What are my own parental idiosyncrasies going to do to my kid?
Here's the story.
I have long been very proud of my child's sleeping habits. Maybe a little too proud. I hear other parents tell stories about their 2 year old still waking up in the middle of the night, demanding a drink, a meal, or to climb in bed with mom and dad. Or the kids who refuse to ever sleep anywhere except mom and dad's bed. I admit, I have been judgmental about this and have had little pity for those people when they complain about being tired due to their toddler's inability to adapt to sleep. I have seen it as a parental fault in a way, because I have felt that as a parent it is our job to help teach a kid how to sleep, and that we help them establish lifelong good sleep habits. And who doesn't want good sleep?
Okay, so back to the story. Henry has recently started preschool, which, as a new stress in his life has affected his mood, his eating, and, oh yes, his sleep.
He's been fighting getting into bed. He's been climbing out of his bed, needing us to put him back in several times before he finally passes out. He's been waking overnight, coming into our room, asking to sleep with us.
And, because it's so. much. easier. to let him climb in, snuggle up, and just go back to sleep versus the alternative, which is dealing with him crying and screaming as we order him back to bed.
Another back story: earlier this week, out of nowhere, H told my mom, "If Henry is a bad boy the blue vac will go out with the trash and you can't play with it anymore."
Oh. really? We don't know where he got this idea, but it seems to have the daylights scared out of him...
Therefore at 4am a couple of days ago, when H got out of bed, my husband out him back in - with a warning.
If he didn't stop crying and didn't lay back down and go back to sleep, then the blue vac was going to be put out for the trash guys to come take away.
The child as immediately silent and slept the rest of the night.
Okay, so how do I tie these two seemingly disparate tales together?
Here goes.
Henry is near an age where children develop a "magical thinking" about death. They can believe that it was something they did, they thought, they said that caused the death. They are especially prone to believing that some bad behavior on their part caused the death.
Henry loves all vacuums. If we take away one of these beloved objects because he does something bad, then (this is now becoming my own musing) are we setting him up to believe even more strongly that his bad behavior causes things that are precious to him to be taken away?
If we do this, then if and when there is a death of a person (or, our beloved dog), is he more prone to believe that HE did something to cause the death.
Are we setting up a belief system, a paradigm, for him to be burdened with the wight and guilt of that?
How cruel are we?
What kind of parent would do that?
And am I a total nut job for even having these thoughts and making a jump from a threat that is supposed to help control behavior to something as morbid as death of a loved one and the emotional damage it might inflict on our poor little vacuumless child?
THIS is where parental idiosyncrasies come into play, and how my work, no matter how hard I try, is going to seep into my raising of my child.
Don't you feel sorry for him?

Wednesday, July 07, 2010

Raring to go!

How do you spell "raring" anyway? I guess since spellcheck didn't flag it, I must have done it correctly.
Okay, I know I ought to be studying right now. I have the stack of notebooks/binders, study guide, etc sitting next to me at the dining table. The pile of stuff is like a pathetic, ignored dog. "Read us, whimper whimper." Eh. Maybe later.
I'm trying to justify my current study avoidance by at least doing other productive things, like renewing my passport, completing my application for permanent medical licensure in the state of Missouri (a TOTAL pain in the arse), working on other "official" doctorly documentation stuff.
BUT what I really want to do is get on with my life as a hospice and palliative medicine fellow!
Last week I was so excited to get to start the very beginning of the journey. Sort of.
Background check: I took a nice long maternity leave, utilizing the "gift" that is FMLA. I took 12 weeks of time out of residency. Now I have to pay back the time. So, technically, I've done the graduation stuff, but officially am still a resident until September 30.
Back to the story.
Last week on July 1 and 2, the hospice and palliative med (heretofore referred to as HPM) had our orientation days. We went over the perfunctory stuff: schedules, policies, goals of fellowship. And then we got to do some fun stuff: LECTURES!
Yep, I'm a total nerd. I was so pumped about getting to sit through a couple of days of lectures. See, finally I'm getting to a point in my education/training/career where I get to focus so much on what I'm actually, genuinely, truly interested in learning! No more sitting through an hour long lecture about the cell receptors involved in organ transplantation rejection and what some scientist is doing to trick those receptors. Now, I get to listen to people I professionally and personally admire discuss topics that apply to our shared field of interest: HPM. So exciting. I was riveted.
What was so exciting, you ask?
Well, we had a talk about management of nausea/vomiting and constipation. Way more exciting than you'd think. Except, these are symptoms that have huge effects on people's quality of life - not the most glamorous - but probably among the most important.
We talked about management of pain, calculating doses of pain medication, changing medications and therefore adjusting doses. A fun little math game, really, in that "word problem" sense. For example:
Your patient, Ms. B, has taken 6 doses of oxycodone over the past day, totalling 30mg. You wish to change her medication from oxycodone to oral morphine. If 20 mg of oxycodone is equivalent to 30 mg of morphine and you plan to allow doses every 6 hours, how much should each dose be?
I have always loved word problems.
There was a brief discussion about the use of social media in raising awareness of the field of HPM and getting word out to the public.
Hello, I'm obsessed with facebook and I have 2 blogs - okay maybe they aren't always that current - but, of course I'm interested in social media!
We also covered applied ethics and its role in HPM. So cool.
We covered communication skills - probably one of the key skills needed for HPM. How we figure out what someone is saying when they can't find the right words or right way to say it. How to tell them what they are ready to hear, and what they need to hear. So many little nuances and so much to learn here.
Then there was the lecture on prognostication (I hate even using the word "lecture" because these are so not lecture-y). Meaning, how do we arrive at our best estimates on the trajectory of disease and the effect it will have on the quality and duration of a life? Phew. Talk about tough.
And, importantly, we talked about the role of self care in the life of the HPM physician. How do we maintain our sanity when we are working daily in a world with so much stress, emotion, chaos, morbidity?
Can you guess how I might choose to help deal with these? Any takers?
And this is my point today: I'm a writer.
I'm not saying I'm a Writer. I'm saying, when it comes to dealing with my inner world, or how my inner world reacts to the rest of the world, or how the rest of he world looks to be functioning, the way I deal is to write.
For the past few months I have been trying to make myself sit down more often and just write. Just do a blog. You might notice after reading my entries that sometimes it takes me a while (a few sentences to a few paragraphs) to get to the meat of the story. It's because I just sit down and start typing. The story eventually comes through. Yes, there is often some back story to trudge through, but eventually, we get there, don't we? Usually?
It's not always exciting. Or gut wrenching. It has up to now been an effort at discipline.
As part of my self care, I am going to renew my efforts. I want to blog more. I would very much like to say I'll blog a little bit every day - but then I just know I'm setting myself up for failure.
I'm going to try, though.
This may actually require splitting my blog (again). There are some things I wrote that I don't care if everyone sees. At times, though, the line between personal and professional needs to be a bit more distinct. One of my hopes would be that if I am able to blog more regularly (goal = 3 times weekly) throughout my fellowship and maybe beyond, that it can be a record and a guide for those who may want to learn and do more in HPM.
SO: if you come to this blog and find it seems a bit different that's why.
Once I make the final split, I'll figure out how to let people know.
Okay, now I guess I ought to pay attention to some of these books over there...