Monday, April 5, 2010
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.
"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.