Tuesday, April 6, 2010

Believing in what you do

This story (from the NY Times) about the young palliative care physician in New York who died at age 38 from metastatic breast cancer is pretty harrowing. Dr. Desiree Pardi was a rising star, apparently, in the field of palliative care medicine. She was first diagnosed with cancer at age 31 and battled the recurrences with surgery and chemotherapy while maintaining a full work schedule over the subsequent 7 years. As a palliative care doctor, she spent her days having frank conversations with patients who had no chance for recovery and helped guide them down the road toward a resigned acceptance of death.
About a year ago, she was asked to speak to a young woman who refused to accept that her life was limited. Dory Hottensen, a social worker who was there, later recounted how Dr. Pardi sat down and held the woman’s hand.

“I could see that Desiree had an unusual connection with her,” Ms. Hottensen said. Dr. Pardi spoke kindly, and “told her that she was not going to get better. In fact, she was going to die very soon. What did she want for her last days? How did she want to die?”

In her own battle with cancer, however, Dr Pardi chose to pursue every means of aggressive treatment, no matter how futile, up until the very end. When it became apparent that there was nothing more to be offered and doctors broached the possibility of hospice, she vehemently refused to cede the hopelessness of her situation.

A doctor asked if she would like a palliative care consultation. She was shocked; she interpreted the question to mean that she had been identified as someone who was dying, and she did not think of herself that way.

She had crossed to the other side of the mirror, from doctor to patient, and she no longer saw an orderly path to death.

It's easy to sit here and condemn Dr Pardi as a poor soul in denial, as someone who turned her back on the very principles of the field which had made up her life's work. I mean, she counseled patients to accept the inevitability of forthcoming death while refusing to consider the possibility that her own terminal illness had reached a stage of futility. It just doesn't seem very consistent does it?

But I would caution against standing in judgment of this unfortunate woman. We all make a thousand little betrayals to ourselves every week. We all have those grand visions of the Ideal Life we hope to lead. But real life has a way of trashing our best laid plans. We're never as courageous or ethical or as kind as we envision ourselves to be lying in bed at night, staring at the ceiling. We fail to live up to our standards. We compromise our goals and aspirations to an alarming degree. I'm not always the father, the husband, the surgeon I aspire to be. We do the best we can but it isn't always easy. Life rarely conforms to the neat little algorithms of personal conduct we've laid out in our minds.

Those who have read this blog for any length of time will know that I am staunchly opposed to absolutism and inflexible ideological fervor. The contingencies and tribulations of life demand a reasonable pragmatism that allows for some flexibility in choosing unexpected pathways. Don't condemn Dr Pardi for turning her back on her life's work when the chips were down and her own life was at stake. Maybe in her own private moral computations it was more honorable to fight her cancer until the very end. She was too young to die. It wasn't fair. Perhaps the bigger betrayal in her mind would have been the acceptance of an arbitrary early death. Who knows. But we owe her the respect and the autonomy to make those tough decisions for herself.


HMS said...

This article is in fine contrast to this one, also from NYT:

"In Medicine, the Power of No"


In order for the HCR to ultimately/meaningfully reel in runaway cost, there has to be a point to say No. Unfortunately, it's rarely that black n' white in medicine, as late Dr. Pardi's story shows.

Anonymous said...

It should be noted that Dr. Pardi spent her own funds on many of the treatments she received. It certainly is her choice to do so.

What's interesting is that it's easy for physicians to submit to the idea of rationing care when they know that their own resources - both in terms of money and access to their fellow professionals - is generally secure.

Dr. Pardi's choice was her own. She better than many knew what she was facing in her struggle - what it meant in pain and money to continue to seek treatment.

HMS said...

To Anonymous 12:26

True. Please take a look at the aforementioned article; i think the author did a pretty good job dissecting the issue down to social norm and psychology. When life is at stake, it is indeed very difficult to draw the line between wastefulness and necessity.

Anonymous said...

Its just human nature to want to stick around as long as you can...even if you believe in an afterlife, how do you really know your goin to the "Good" place?? Maybe the Muslims are right and you only get the 70 Virgins if youve blown up, I mean followed Islamic law...And if theres no God and you just lay in a coffin for millions of years that doesn't sound so good either...

Anonymous said...

I look at Pal as making sure the patient/family is given every chance to make choices... and then keeping the door open for them. This means being totally frank on what's to come. They gotta know. The approaches I see that I have a problem with are where the obligation seems to move totally over to the family's experience in the patient's death. Often things are done or not so that the family feels no pain. My obligation will always be to the patient first and family second. Extubation often is done to prevent the family from having to suffer the sight of the tube. In some of these cases I think priorities have been seriously F'd up.

Anonymous said...

Breast cancer is the worst. We need to make this disease behave and stop taking good people.

Unknown said...

I think each of us should be shown respect in making end of life decisions. Normally I want a lot of information about any medical issue I have. However, if I had cancer and someone close to me was willing to take on the role that Dr. Pardi's husband did, I might just choose to do what she did - tell them to not give me the details - particularly during my initial treatment. I might find myself calmer without knowing where it had spread, and what my odds of surviving were.

Anonymous said...

I am Desiree's husband and while I appreciate the numerous comments and that this "story" has generated so much discussion, I need to convey the article was very misleading and that many of the take away messages are wrongly presented.

My wife, knowing her life was going to be shorter than most spent her remaining years preaching the value of Palliative Care; something she herself accepted in her life.

The problem is most people lump Palliative Care and end-of-life care as one field of medicine. They are two separate disciplines. Second Palliative care is about providing symptom support throughout all stages of a chronic disease, it is about providing patients with a full understanding of their condition and treatments so they can live a life they want and it is about ensuring a plan is put in place to support a patient’s wishes.

My wife never coerced people into ending a fight, she herself believed everyone should make that decision - but they have to know what they are getting into. They need to know the likely effects of treatments, such as CPR and that it is a process where your ribs most likely crack, your lungs are punctured, you will most likely be on a respirator (not like we have grown accustomed to on TV). She believed in people needing to know the truth and planning accordingly.

She also believed no one should ever take away or overwhelm your coping mechanisms (her's being to use me as a buffer) and so we had a medical team and a wonderful oncologist for over 5 years who supported that through me. But my wife was aware that she would most likely die in agony; that financially I would be burdened with excessive credit card debt and emotional exhaustion and we agreed to go that route. I stopped working and learned how to function as a home health-aide to support her.

I was well aware our choices were setting her up for increased pain and she was willing to endure it, but she told me that if a time comes where I need to make a choice to withdraw care that I should remember there is a difference between extending life and extending death and that her body was too sick to be saved and she would not want to be "saved" if she could not function at a high level. We had that discussion, another aspect of Palliative Care - my wife lived and breathed palliative care every day.

Please understand Palliative Care is about providing people the information they need (and avoiding false hope) so each and every one of us can make a decision about how we want to deal with a chronic disease. It is about quality in life and quality in death and tailoring a medical plan to achieve those goals.

She did not want Palliative care to visit with her in Boston because it overwhelmed her coping mechanisms, because she wanted me to be the buffer - not because she did not believe in it. Note that you are reading quotes from countless hours of being interviewed; the true meaning of them is lost in this "story". Please remember the article in the NY TIMES is in fact a “story”.

One thing my wife wanted was for people to learn, to discuss, to explore the concept of palliative care based on her illness and I am thankful so many of you are discussing.


tom said...

Robert...thank you for providing a most valuable perspective on Desiree's clinical beliefs and how those beliefs played into her decision making and her clinical practice.

Philosophical discussions and real life applications rarely run in parallel. Ask a young fighter pilot "do you want to live to be a hundred?" Then pose that same question to a 80 year old former fighter pilot. Surprised at the rwponses?

I believe that most people who chose the path of "do everything"-have never witnessed a code-perhaps the most dehumanzing event in medicine...How our society can preach the value of dignity of life, yet subject there loved ones to the most indignant process of a Code Blue is beyond me.

Life plannning needs to take on the mantel of financial planning. It is ok to say "this is my plan...please do not question my plan.."

Cristine said...

She informed people of what they didn't know, she already knew... Why would she choose to be the patient in this circumstance? If it were me I would have done the same thing.

Also, why would anybody judge her? Or anyone else in this horrible situation??

Knowing is half the battle, she knew too much though..... Probably why she worked during her last years. :( I feel sad for her young husband and other family members that she left too soon.

Unknown said...

Your grasp of human nature and total acceptance of it is really touching. Loved your post. We all deal with death in our own way. I will add though, that given the state of healthcare today, we need to begin having a real conversation about what constitutes quality of life and what responsibility we have, if any, to make wise choices about the end of life that don't put an undue burden on society.

Entre Nous said...

My mother was an RN for 45 years, needless to say well schooled in bedside manner (which is hard to find these days). When my sister was diagnosed with breat cancer at 40, she began the literal fight for her life with my mother right behind her. She made it seven years, remarking everytime a doctor advised her she was 'terminal,' "Well... I'm not dead yet."

I was diagnosed with a different sort (site, people ask me, what was your 'site') of cancer at 40 as well, I was fortunate to live in a different area, different doctors, and I'd like to say, a whole heck of a lot smarter. No matter who they were dealing with, they were always positive.

After having had Adulthood & Aging, as well as Death & Dying in college, then watching my entire family die within four years of each other, I have to believe that the 'stages of dying' is just a load of academic crap thought up by some bored (we won't mention any names K-R..) academic looking to publish or perish.

Don't we all know we are going to die, the only question is when?

My mother watched many a person who was told "You have ^ (7, 8 you name it) months to live, die promptly within the time allotted. Yet when there was a misdiagnosis, and the person showed up years later with an unrelated complaint, only to find it was they that should have been dead ten years ago, those people walked away yet again, to die of old age.

Our mother was a firm believer in the power of mind over matter, and after all she saw, was NOT a believer in telling anyone there was no hope, period. It does something to those who hold doctors on pedestals believe in every word they say.

I had a doctor tell me "Theres nothing more we can do for you." That was in 1995...

Anyone ever think this poor woman lasted so long because she refused to lie down and die?

Unknown said...

This blog post was included in May 2010's Palliative Care Grand Rounds. http://tiny.cc/3ngbk

Sergiu said...

Buckeye where have you disappeared? I miss your articles.

rlbates said...

Missing you. Hope you and your family are all doing well.

Anonymous said...

People are gonna start taking your stuff if you don't show up once in a while.

SCRN :o)

Tom, MS-2... er 3 technically now I guess said...

Buckeye, where'd you go? Taking Step 1 in a week, and have missed your posts!

Tom, MS-2... er 3 technically now I guess said...

Buckeye, where'd you go? Taking Step 1 in a week, and have missed your posts!

breast reconstruction surgery Los Angeles said...

It is indeed great if yourself fighting with a life disease cancer you could be giving support to others.Give them support and also help them face the truth of life.