Sunday, October 03, 2010

Lesson One: It's Not Up to Me

I decided that as I begin the adventure of fellowship training that I'm going to make an effort to actually chart my progress as a developing palliative care physician. It seems the best way to do this is to start right here, at the beginning. Who I am on day one versus who I am on day 365 and on other days in between.
After just one day, after just the very first day of fellowship, I've had to change my perspective about myself as a physician.
Friday, October 1, 2010. The journey begins. It was a bit harried thanks to a debacle at our house over a certain missing key, and my near inability to leave my house thanks to said missing key. Once I finally made it to work, I knew right away that I felt different. Something about actually being able to introduce myself as a "fellow" rather than a resident brings with it a different kind of responsibility and also a different kind of freedom.
Much of the day was spent alongside one of our fabulous palliative care attendings. We visited with patients and their primary care teams, did what we could to help both.
Toward the end of the day, the oncology attending saw us and got our attention. He was preparing to place a consult to us to help discuss goals of care with one of his patients. He felt he and another oncology attending had been very frank and forward with the patient about her prognosis (which is bad) and the need for her to begin getting final affairs in order and preparing for what is likely inevitable - her death. Neither physician was sure the patient really "got it," or that the information was really sinking in - so this is where we are asked to enter the picture.
As we get more information about the patient, the delicacy of the situation becomes more evident. She is in her late 30s and has advanced cancer, which has spread to multiple sites and organs. Her kidneys are minimally functional and not able to clear the toxins and maintain the required balance of electrolytes in the body. She is not a candidate for further chemotherapy or other "curative" treatments. At this point, giving her IV fluids and hoping her kidneys will clear at least some of the fluid and toxins is the only option. This is a temporizing measure, though, as her body is showing signs of not being able to clear the fluids being given to her, so they are building up in her body - something that eventually leads to a variety of other life-threatening issues. Her labs continue to show problems with toxins and electrolytes. She is nearing, literally, the end of what medicine can do to maintain the delicate balance between life and death.
Add to this the fact that she has two children. One in her late teens, another pre-teen.
Add to this the fact that, for the most part, she "feels just fine."
Even though, medically, everything looks horrible and she could be, truly, within days of her death, she feels no worse at this point than she did weeks ago - so how can she really be that sick?
The attending and I prepared to visit with the patient and her mother and brother. Before going into the room, went over possible approaches to the situation, trying to strategize, or get our heads in the game.
Within minutes of our entering the room and beginning the conversation, it starts to become clear: no amount of our talking is going to convince her that she is, really and truly, very sick, very much dying.
She is not ready to "call it quits or say I'm done."
She feels that there must be something more that can be done, and that she will survive this bump in the road.
While the attending is guiding the discussion, inside myself I feel my heart starting to race. In my mind, I hear myself running through all of the arguments to be made in order to convince her that what she thinks simply defies reality. I'm feeling frustrated that she won't hear what we are trying to say and that she won't listen so that we can help her see that she is close to death and that she needs to prepare for it. She needs to get her affairs in order, have the conversations with her children that she may not have much more time to have, needs to accept that if her heart stops, no amount of our interventions and pounding on her chest and sticking needles and tubes in her is going to make her any better than she is at this moment.
I'm fighting the urge to grab her by the shoulders and say, "listen. to. me."
Why won't she just listen? Why won't she let her guard down? Why won't she (and her family) see reality?
If only she knew how much better the end of her life would and could be if she would just see it my way.
After over and hour of discussion, we leave the room.
We have had no more success than the oncology attendings at convincing her that her time is limited.
There was a victor, though. The patient.
By the end of our conversation, we knew what was important to her in her death. She wants to go out fighting. If it means being coded and ending up in the ICU, then so be it. If it means not being able to leave the hospital and get home to see her cats and her beautiful gardens again, so be it. The important thing to her, as she said, is that however she goes, whatever happens, "that was God's will."
As long as she continues to "feel okay" and feel that "there is hope" and "not have the feeling that this is IT," then, though she didn't say it, but what was clearly inferred, then the institution of medicine is just wrong about what we're telling her. She feels that although her labs looks bad, although the fluids are accumulating and although the cancer is spreading, that our predictions just an't be right.
So she will continue to fight and fight and fight.
So, although my judgement of her is that she continues to "deny, deny, deny," there is nothing more I can do to make her see our side - a side I truly feel is just plain right.
Because for the patient, it isn't about numbers and probabilities and what I think is a good death. It isn't about what her oncologist thinks is a good death.
It's about the fact that she doesn't believe she is dying.
And she is my patient.
She is the one I  to whom I owe a responsibility to provide care and compassion and all the medical information I possess relevant to her life.
She decides.
And while I may personally disagree with her, the truth is that the way she chooses to live her last days simply aren't up to me, are they? She is the one who must face the consequences of her decisions. Not me. So I owe it to her to respect her perspective and support her in this time, do what I can to make sure she is comfortable - physically, emotionally, spiritually.
This means, for me, to learn how to back down from my innate desire to always try and convince people of my point. To always try and get people "on my side."
My challenge will be to learn how to function in a place of respectful disagreement and not let it compromise the quality of care I provide.
So, in just one day I learned a lesson and discovered what may be the biggest challenge for me in this field. Imagine what the next 364 days will bring.


abby said...

How fascinating. I am looking forward to reading about this next aspect of your training.

Have you heard of the genre of autothanatography? It's the story of one's own death. I just went to a conference this past weekend and a presenter analyzed Unbecoming as an example of the genre:

bethany said...

Wow. I agree with abby - I am definitely excited to read about this journey in your career. You are an awesome doc -- your patients are very lucky to have you on their team.