Saturday, August 15, 2009


With all the debate going on over health care reform, one area that has prickled me to no end is the recent misinformation about advance care planning. Whether or not President Obama wants to ration care, whether or not this process is paid for, advance care planning is all about informed consent and choices. One of the hats I wear at work relates to this very process, so I feel like I know a little bit about this.

First of all, let it be known far and wide that simply having an advance directive does NO good. It doesn't impact the care you do or don't receive, and most of the time, it can't even be located, let alone honored.

What DOES make a significant impact is HAVING THE DISCUSSION. Talking with a knowledgeable expert about what options are available, the pros and cons, risks and benefits, likely outcomes, etc. Talking with your physician and your family about your values. This is what advance care planning is. Advance directives are the documents that result from the planning. (And just a personal plug, if you have a Living Will, you might as well toss it. It is very limited and not helpful. Get a Power of Attorney for Healthcare.)

The discussion needs to happen with the physician, but what physician these days has the time to go in depth about these issues? So the current state is to ask patients to "sign this form", and we call it "informed consent". If you've ever had a medical procedure, you have experienced this. Tell me that your doctor truly spent the time to inform you of the issues, and then asked permission. It just doesn't happen.

But I digress. The issue again is about choices. I saw a dying young man recently who had pain written all over his face. He has been on multiple regimens for his pain, with varying degrees of success. Clearly, what he is doing now isn't working. Yet, each time I tried to discuss another option with him, he refused. It wasn't necessarily fear of drowsiness from strong pain relievers, or not wanting to take any more pills. For this young man, it was existential. He had been healthy, and could not understand why this had happened to him. He was struggling with issues of meaning and spirituality, and though I tried to describe for him how he might be better able to deal with those issues if his pain was less severe (and the converse is also true), he would have none of it. I knew I could help him feel better. He chose not to. Who am I to judge?

Another recent encounter was with an elderly man whose family did NOT want to tell him how sick he was, let alone that he was on hospice. This man was alert, and knew what was going on around him. Yet, when I specifically asked him how much he wanted to know about what was happening to his health, he deferred to his family. He wasn't trying to avoid it and wasn't in denial. He knew how bad his health had been the last few years. But this was his informed choice, to defer the discussion to those he trusted.

Cultural issues abound. An Asian family wanted me to not talk about ANYTHING negative around their dying mother. They truly believed they would witness a miracle. They were open to palliative treatment, but not to talking about dying.

Lest anyone get the wrong idea, I do NOT in ANY WAY support euthanasia or physician assisted suicide. These are morally reprehensible to me. That is not the choice I am talking about here. But for so long, we have tried to treat chronic progressive disease the same way we treat acute life threatening illness, we have forgotten to note the differences. We can and should continue to use aggressive therapies when appropriate. But who is the one who should really have the final say as to what appropriate is? A patient who doesn't know all the options cannot meaningfully participate in this discussion with the expert physician. Docs need to get over themselves and start being honest with patients. We don't take away their hope, even if they are terminal. The disease did that. We are helping them prepare, and this benefits everyone. And guess what? It turns out to cost less according to all the studies out there. We should do the advance care planning because it is the right thing to do, and happens to have financial benefit, and keep the financial issues secondary, where they belong. Then we won't have all the debates and misinformation about Death Panels. Patients will be well cared for, and when their lives are ending, they can be comfortable, and surrounded by love.

Wednesday, August 5, 2009

risa's pieces: Palliative Care Grand Rounds: August 2009

Palliative Care Grand Rounds is up at:
There is even a mention of my humble ramblings!

Sunday, August 2, 2009


New York City. Gotham. The Big Apple.

I grew up in a blue collar town near St. Louis. We weren't considered a suburb, because people fled the big city to get TO the suburbs. No one fled TO our town; just the opposite. Nonetheless, we were close enough to be near the "big city" but far enough away that I never considered myself an urbanite.

Medical school was in Chicago. Moving there was one of the scariest days of my life. I told all my friends that if I didn't get mugged, then I wouldn't really have felt like I had lived in "the City". I very much feel like I lived in "the City" after getting rolled for a sack of flour, a gallon of milk, and some pocket change by a group of kids.

What does that have to do with NYC? I am not a big city person. They are fun to visit on occasion, and there are loads of things to do, but I am very happy to return home from them. Several years ago, we took a whirlwind trip to NYC to see CATS on Broadway before the show closed. It was a short trip, but the show was wonderful. The song "Memories", of course, was one of the highlights. Memories in NYC can be powerful.

My oldest child is there now, and we went to visit him recently. While there, we visited Ground Zero. My wife wasn't anxious to go there, as she thought there would be nothing to see. I wanted to go anyway, and we had the time and it was a quick subway trip, so we went. Right now, the site itself really ISN'T that much to see. A huge construction site, much like any other big city construction site might be. However, to the west is the Memorial museum, where there are many of the flyers, photos, paper cranes from Hiroshima survivors, etc. And to the South remains St. Paul's, the church that, though directly across the street from the Twin Towers, was untouched by their fall. Interestingly (to me), there is a pew that George Washington used in that church. There, too, are many memories of the events of that fateful day.

I was surprised by how much the experienced touched me. As I reflected on where I was on 9-11, what we all experienced that day, and how very many lives were effected that day, I was filled with a mixture of sadness, hope, anger, and a large dose of disappointment. The cots where the volunteers slept when they could, the pictures, the firemen's tools, the mangled metal, and all the rest are powerful memories.

But what REALLY was the most powerful emotion is the grief that this epic event is all but gone from our collective memory. It has been almost 8 years, I know. Time heals, I know. It has been about 5 years since my dad died, and just over a year for mom. I know that memories change with time. But with something this big, how can we as a nation be so calloused as to not be out there every day with a mixture of sadness and pride over this? I don't get it. Not at all. Everyone should go there; seeing it brings it home, makes it real. The memory becomes tangible, and the experience can teach us so much.

I know this isn't really hospice related, but there is at least a tenuous connection: no one knows the day or the hour of the end of their lives. I tell patients this all the time when I am giving them the prognosis talk. I could walk out their door and get run over. They could have a fatal stroke tonight, notwithstanding their terminal illness. An insane person with a mission could blow us all to pieces next week. Live life like it is ending soon, because, after all, it is.

The song from CATS is bittersweet, talking of memories of glories long gone, yet looking forward to the future. The lessons of 9-11 should do the same. And the lessons of the lives we touch every day should too.

See here for the lyrics: