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The recent New York Times article featuring the story of Dr. Desiree Pardi, a palliative care physician with advanced breast cancer prompted a lot of responses on the NYT site (400+) as well as Lyle Fettig's post here on Pallimed.  Last night, we were able to hear Desiree's husband, Robert Pardi's view on the article and more about Desiree thoughts, actions and philosophy towards life.  With Robert's permission, I am reposting his Pallimed comment as an original post in order to make sure a more complete picture of Desiree can be understood.  Please share his words whenever you see a site, blog, or someone who may not have a rich appreciation for the complexities of her decisions or what palliative care truly means.

From Robert Pardi:

I am Desiree's husband and while I appreciate the numerous comments posted and the fact that this "story" has generated so much discussion, I need to convey that 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. Isn’t that what it’s all about ?

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 that from CPR, and know that sometimes getting on a respirator means you may never get off one. 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 using me as her information buffer (inaccurately referred to as “denial” by many). We had a medical team and a wonderful oncologist for over 5 years who supported her while using me as that buffer. My wife was aware that she would most likely die in agony, and that financially I would be burdened with excessive credit card debt and emotional exhaustion. Yet, 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 that our choices were setting her up for increased pain that she was willing to endure, but she told me that if a time comes when I need to make a choice to withdraw care that I should remember there is a difference between extending life and extending death. She said that if her body was too sick to be saved, 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 everyday.

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; their true meaning is lost in this "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.

Rob Pardi

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NYT published an important article that should serve as a discussion piece for all palliative care programs and fellowships.

Dr. Desiree Pardi was the palliative care medical director at Weill Cornell Medical Center in New York. She died of metastatic breast cancer in 2009 at the age of 41. Her story provides palliative care clinicians an opportunity to reflect on how our own personal mortality interacts with our professional lives. I did not personally know Dr. Pardi. I write this post knowing that many readers did indeed know her, some very well. I express my sincere condolences to Desiree's husband, Robert, and family, as well as any colleagues that were affected by her death. I admit that my thoughts below are largely based on how I might feel, so my apologies if what I say is presumptuous.

From the article, Dr. Pardi's goals of care were very clear. She wanted to receive any therapy for her cancer that might extend her life (even if the therapy had little chance of modifying her cancer) but had made it very clear to her husband that if her death was imminent, she would want comfort measures. The article references the care she received from Dr. Betty Lim, another palliative care physician, who very aggressively treated a malignant bowel obstruction but then provided comfort care only when it became clear that nothing was working. This approach appeared to honor her patient's goals of care as a good palliative care clinician should.

Unfortunately, the article's overall theme undercuts the idea that patient autonomy and goals of care are central to palliative care in spite of giving a fine example in Dr. Lim's efforts. Rather, palliative care is painted as existing mainly for the purpose of cajoling patients to accept the unacceptable and to "be ok" with the idea of receiving only therapies oriented towards comfort.

You can and should read the article yourself (if you haven't already), but here are some snippets along with commentary.

Towards the beginning of the article, we read the following:

"In 2008, while on vacation in Boston, she went to an emergency room with a fever. The next day, as the doctors began to understand the extent of her underlying cancer, “they asked me if I wanted palliative care to come and see me.” She angrily refused. She had been telling other people to let go. But faced with that thought herself, at the age of 40, she wanted to fight on. "

Later, we learn that she was out for day of "whale-watching and visiting the ducklings in the Public Garden" the day prior to her ER visit and we also see the below picture of her:

Dr. Pardi had to have known the "party line" that palliative care should ideally be introduced early in a life-threatening illness, but she also certainly knew that other providers DON'T use palliative care that way, that palliative care is often not offered until it is felt that the prognosis is really poor and disease modifying therapies likely won't make any difference at all. When you combine this with the fact that Dr. Pardi had relinquished her right to discuss the extensiveness of her disease, preferring to have her husband talk with doctors (an unusual move, but well within her rights), the offer of a palliative care consult likely scared the crap out of her.

"She was admitted to Massachusetts General Hospital, and it soon became clear how far her cancer had spread. 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."

What we can't know from this article is how the bad news was broken to her, if the news was broken at all given her communication preferences. We also don't know the timing of the offer for a palliative care consult in relation to any discussion of the cancer progression. While it's impossible to know for sure from this article alone, I'm guessing she had an ECOG performance status of 0 (zero), so I'm guessing she had little clue of what was coming even if she was waiting for the other shoe to drop. Her initial reaction of running away from a palliative care evaluation was normal even for a palliative care physician! She certainly had some denial of the potential that she had a poor prognosis, and I don't say that pejoratively. Denial is a normal response to receiving this type of news. She was, just like many of our patients, running away from the fresh idea of a poor prognosis rather than what palliative care has to offer to patients.

Later on as her condition reached a more advanced stage:

She refused to be treated by the renowned palliative care specialists at Mount Sinai whom she knew professionally, but her husband and her best friend, also a doctor, persuaded her to allow a palliative care doctor to oversee her care, with a team of gastroenterologists. She settled on a young doctor she had never met, Betty Lim.

Here's a very important point that I would not necessarily expect the NYT to highlight. Dr. Pardi was a young leader in our field. She seemed bound and determined to not let her disease get in the way of her career, poor prognosis be damned. She was in the prime of her life in what Erik Erikson would describe the "middle-adult" years. Death is not an age appropriate part of this stage of life, obviously, although this does not mean that people of this age don't die. The main challenge of this stage, according to Erikson's model, is maintaining generativity vs. stagnation. What is more threatening to generativity than the threat of death? Nothing. But the experience of a life-threatening illness is an intensely private experience that exposes our human frailties to those who care for us. Our field is growing, but remains small in many ways. As compassionate as I know many of my colleagues to be, the idea of laying all the cards out onto the table in front of the same people with whom I may wish to collaborate is, well, nauseating. I don't know if this actually played a role, but it's plausible.

Lastly:

"She preached the gentle gospel of her profession, The persuading patients to confront their illnesses and get their affairs in order and, above all, ensuring that their last weeks were not spent in unbearable pain."

But then it's concluded that she endures that type of suffering near the end of her life, perhaps unnecessarily. The assumption that would be easy for a lay person to make is that her bowel obstruction was avoidable, and that her end might have looked different if she would have "accepted" a palliative care referral earlier. This would be a dubious conclusion though. Perhaps she endured suffering with chemotherapy that others might have wished to avoid, but she was likely destined to develop a bowel obstruction based on the location of her disease- maybe it would have been a little earlier without chemo. She required large doses of pain medications because of the extent and location of her cancer, not (presumably) because of any decisions that she made.

I'm not so convinced that having patients "confront their illness" is part of our "gospel"- informing patients to the extent that they want to be informed certainly is, and so is helping patients to get their affairs in order. The two don't always need to go hand in hand. And in the end, Dr. Pardi appeared to stay true to the latter part of the message. She knew who she wanted to make decisions if she could not (her husband), and had extensive discussions regarding how he should approach those decisions if it were felt that she would be unlikely to recover. And he approached them with courage.

There are likely many more points to be unpacked from this article- please leave comments below.

One final thought: We are faced daily with paradox in our work. Death is not the enemy vs. the fact that nobody wants to die. Unnecessary suffering should be avoided or palliated vs. suffering as a transformative experience. As F. Scott Fitzgerald said:

"The test of a first-rate intelligence is the ability to hold two opposed ideas in mind at the same time and still retain the ability to function."

Thank you, Desiree and Robert for the gift of your story to our field.

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Just to complete the loop in case some of you missed it, the NY Times posted several letters to the editor in response to the article featuring Dr. Desiree Pardi, a palliative care doctor who died from breast cancer.  Multiple letters were published including a joint letter from Dr. Lim and Robert Pardi as well as Anthony Back, Sean Morrison and Gail Gazelle.

Pallimed coverage and over 20 comments from readers can be found here, and a longer version of Robert's response can be found here.

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Thanks for a great 2010 Pallimed readers.  We had over 80,000 visits and over 130,000 page views in the calendar year 2010.  We will be aiming even higher in 2011 and we appreciate your readership and support over the years.  In case you missed some of our bigger posts this year here is a recap of the most viewed posts from 2010 (posts from prior years are not included). Views are listed after the link.

1. How to Make the NEJM Early Palliative Care Article Spread - 1436
2. Implantable Cardiac Defibrillators- Hospice Role in Deactivation? - 1269
3. Game Changer: Early Palliative Care for Lung Cancer Patients Improves QOL AND Median Survival - 1177
4. NYT on the Death of Palliative Care Physician Dr. Desiree Pardi - 1027
5. Rob Pardi comments on the NY Times article about his wife, Palliative Care Physician Desiree Pardi - 984
6. Catholic Directives on Artificial Nutrition and Hydration -892
7. Life Before Death: Best. Website. Ever. - 886
8. Why Palliative Care Needs Social Media - 871
9. Atul Gawande Checks Out Hospice and Palliative Care - 828
10. Surgical 'Buy-In' and the Surgical Contract - 658