Monday, April 5, 2010
NYT on the Death of Palliative Care Physician Dr. Desiree Pardi
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.
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.
27 Responses to “NYT on the Death of Palliative Care Physician Dr. Desiree Pardi”
April 05, 2010
“And in the end, Dr. Pardi appeared to stay true to […] the message.” Is there a more byzantine hypocrisy possible? Not on the part of the tragic doctor Pardi, but rather Dr Fettig; she lived out her abyss- let her soul be blessed. No, the hypocrisy resides with the living, with us who remain transfixed by the promise of palliative care as all things for all people. Always. After all we no longer need to even face dying any more (to appropriately receive HPM consultation), it is for anyone, any time - as though a civil right. But good Dr. Pardi knew darn well what all of us (actually practicing) in this field know: we see patients facing death. And because of that first hand knowledge and intuition, she wanted nothing of us, whether at MGH, or at Mount Sinai. Dr Pardi, through her neurotic integrity, exposed our sham. For we are not all things for all people, we do care for the dying. And she just couldn’t accept this vision for herself. We should. The sooner we face our own fears and distance ourselves from the CAPC and AAHPM marketing delusions, the faster we will heal our palliative profession.
April 05, 2010
Lyle thanks for posting about this. It was somewhat of a vertiginous experience reading that article, and I'm not entirely sure why yet. For the record, I met Desiree (we participated in a retreat together about 18 months prior to her death), and, while it seems her husband and others cooperated with the article I kept thinking to myself that I would not want such intimate details revealed about me or my family....
Anon, while I am sympathetic to some of your points, I also fundamentally agree with Lyle that making patients accept death is not what our profession/movement is about. No one sat me down the first day of my fellowship and told me 'Your role is to make patients accept their deaths.' I'm not even entirely sure what that means.
That said, it's clear that those patients, even those young patients, who do gain some level of acceptance, do better (emotionally), as do their families (bereavement) - studies like Coping with Cancer seem to back this up. I don't doubt that, but it doesn't mean this can or should be achieved for all our patients. Some people just aren't going to get there, and I strongly believe would be worse off if you pushed/tried to get them to 'accept' what is happening. As far as I can tell Dr. Pardi's stragety allowed her to be an effective palliative doc for most of her career and who am I to judge that. I myself am young, and have young kids, and am pretty confident that at this point in my life I'd be clinging to any chance of a few more weeks/months with my boys if something like this happened.
I think there are paradoxes at the core of what we do:
1. Many (if not most) of our patients facing terminal/incurable illnesses are desperate to live, to have their life prolonged. People like life.
2. This does attenuate for most of our patients as death approaches and it becomes clearer to patients (and everyone else) that our medical interventions to forestall death are of diminishing efficacy and/or increasing burden (aren't contributing to restoring or maintaining a patient's quality of life however they conceive of that).
3. That's most of our patients; but some are never, ever, able to accept their impending deaths (whatever that means) and are willing to take/try any treatment (no matter how invasive/burdensome and how unlikely to help). It goes without saying there are plenty of doctors willing to oblige this.
4. The question is what do we do for our patients who are living out #3? Sure, you make sure they are given realistic prognostic information, and their full range of options including 'supportive-only, but by virtue of being a '#3' patient they are not interested in that. I think you can push them to 'accept' their death, acknowledging the futility of that most of the time, and risking severing your relationship with them; or you can stick around, do your best to control their symptoms, and honor the fact that this person doesn't seem to have any other way available to them to leave this world.
5. While I wish all of my patients could do it this way, and occasionally I see 'transformations,' and as I said before 'acceptance' or whatever you want to call it does seem to make the dying process better for everyone involved, I think we have to face head-on that this is not attainable for all of our patients. You either have to honor that and figure out how else you can help the patient and their family, or not and I guess walk away from the situation or spend your time with the patient reminding them 'you know you're dying and none of these things we're doing are going to help.' At a certain point that seems cruel, and just because most of our patients (eventually) accept this doesn't mean that all of them can OR SHOULD.
None of this is to say, Anon, that I disagree with you about how much (or if) death/dying should be part of our public 'marketing' face, but that's a different issue than this one IMHO.
April 05, 2010
See also this recent Geripal blog post which discusses similar issues: here
April 05, 2010
Lyle, thanks for your post on this article. It's been the #1 most emailed NYTs article for the last day or so. Why is it so popular? I don't know. Certainly Dr. Pardi's story is poignant in the extreme. I feel like Drew, somewhat vertiginous, but I think that is a personal issue - I'm so similar in age, life circumstances, and profession. What would I do, as a palliative medicine doc and young parent, if faced with terminal illness? Although I think I would welcome a palliative care consult - this story makes me question that thought. This explains why the patient's story ressonates with me (not the reporting/interpretation - I agree with your points Lyle). But why is it so popular with the general public? Is everyone thinking, as I am: there but for the grace of God go I?
April 05, 2010
Drew,
Thanks for adding.
Yet another paradox is that while we try to provide our patients with as much choice as possible a)none of us choose the fact that we will die and b) in most diseases we see, disease trajectory is defined mostly by pathology and only slightly by any decision that the patient or doctor makes. If Dr. Pardi had widely metastatic melanoma (pre-PLX4032, at least), then her course would have likely zoomed to the devastating finale and the story would have been much different. But metastatic breast cancer has a different trajectory and often leaves more time for the person to be stuck in limbo where all of those tough decisions on further chemo and "how aggressive to be" are sorted out.
Anon- Is our society death denying? Yes, no doubt about it. Should we try to change that? Yes. But how can this happen at an individual patient level? It's just not going to happen by cramming "death is ok" down their throats. To emphasize something that Drew said, I can think of several patients that would have fired me if I had taken a militaristic approach to cramming their mortality down their throat. Some of those patients I had the opportunity to follow for several months or longer. Some of them eventually came to terms with their demise and were able to talk about it in greater detail, oftentimes shifting their focus of care, some did not. But my hope is that through palliative care involvement, their families will carry forward with them the idea that someone stood brazenly on the shore as the storm rolled in and didn't flinch an eye while doing it.
With respect to the specific statement you seem to take issue with, I suppose Dr. Pardi could have taken the alternative approach of never speaking with her husband or family about what she wanted at the end, perhaps leaving them and her physicians to assume based on her other preferences that she would want to be intubated and resuscitated. I don't see any evidence that she went through those things at the end, even though she probably could have found a physician to do those things without asking any questions.
lyle
April 06, 2010
I have always wondered what my death would be like as a palliative care physician. I'm 40, married with 3 small kids. Many gambits have run through my head.
I picture myself lying in bed after a day of chemo; lights off, bucket handy with a stale smell of vomit, and me, whispering with my eyes closed, "God, please don't let me die".
Like most of my patients, I'm in the intimate space of beholding sorrow and hope, simultaneously. It's a hard space to be in. Few people who aren't dying know this space. It's lonely.
I remember taking care of a physician. He was in his 40's, married, small kids. Multiple surgeries. Max XRT. Exhausted every chemo. Fired hospices.
He would insert his own IV's and debride his stoma with his scalpel. I remember the day he and his wife decided to stop TPN, finish up the last 2 bags. Tears in both there eyes, there was no place they would rather be than in that room together.
He was beholding hope and sorrow simultaneously the whole time, from self cannulating to self dc'ing. It's not easy to understand, spiritual the whole time. It's not a move from denial to acceptance. It's a space that moves.
The is no role for "forced awareness". In my fellowship, that was the running joke. I define my role as being in this well defined but difficult to enter space.
I wonder who will be there for me when it's my turn. Certainly no one from my palliative care team or hospice. My wife, no doubt. Hopefully also a professional from the outside.
April 06, 2010
With drama and clarity, the NYTimes story of Dr. Pardi illustrates that it is one thing to project what you will think or feel in a situation. It is quite another to live the experience.
From my vantage as physician/survivor, I've seen young patients accept their fate when the prognosis is grim and then let go of all hope of recovery, replacing it with those hopes that can be fulfilled in the premature sunset of their life.
I've also seen patients never accept their grim prognosis and, instead, keep their hope of recovery full throttle literally to their dying breath.
And I've seen everything in between. Because patients can expect one thing and hope for another.
In 1993, I expected to die of my recurrent lymphoma before my oldest child graduated elementary school. At the same time, I had hope that investigational treatments would rescue me (which they did).
An essential element of being a so-called Healthy Survivor (http://tinyurl.com/HS-whweb) is striving for a balance of hope and acceptance that helps us get good care and live as fully as possible. Healthcare professionals can help patients find that balance.
We have professional obligations to do what we can to ensure patients (1) understand their choices, (2) make free choices, (3) know they can change their mind, and (4)trust us to respect their choices and provide good quality care.
As clinicians, we can help patients heal by helping them find a balance of hope and acceptance that helps them live as fully as possible each day, whatever levels of hope and acceptance that might be.
(http://tinyurl.com/OT-071006)
With hope, Wendy
April 06, 2010
@Wendy: so well said. Thanks for sharing.
April 06, 2010
A chemotherapy nurse comments on the NYT article here: http://ajnoffthecharts.com/2010/04/06/take-a-stand-against-terminal-illness-for-better-or-worse/
April 06, 2010
Alex, Earl, Wendy, and Marty: Thank you all for your thoughtful comments.
Alex and Earl, I too am in this age range and have a three year old son.
While each patient I meet is unique and I can see how they are uniquely impacted, this is my job and seeing those types of situations is routine and at times even slightly mundane. Mundane isn't a bad thing in many ways- I still have empathy for my patients, but I'm not overwhelmed emotionally by their circumstances and can think clearly through all the issues at hand more easily because of the "normalcy" of it.
However, to think of myself as a patient in that type of circumstance is anything but mundane. I can only imagine how I would react emotionally. It's easy to accept our universal mortality at a cognitive level, even when all is well. A greater challenge for all of us is to consider our own mortality (even in good health) on a spiritual and emotional level and how those thoughts/beliefs interact with our professional life and effect our interactions with patients. Beyond how it influences our work, it's likely just plain spiritually healthy to work on this because as you say, Alex, "there but for the grace of God go I." No small task and there are of course many different approaches....
So the NYT article touches on the "Inner Life of the Physician" without providing any depth to really understand the true nature of the physician-patient's inner life- we only see shadows. (For related reading, I'd recommend this article.)
Wendy,
Thank you for sharing your personal experiences and thoughts. I appreciate the links.
Lyle
April 06, 2010
Great discussion. A few things I haven't heard yet:
1) Dr. Pardi could afford to pay for whatever treatment she wanted. So it's hard to generalize from this case to others. After all, 25% of families go bankrupt paying for cancer treatment their insurance doesn't cover. This is one (but not the only) reason why it feels unethical to me to let the cost question be separated from the palliative care/dying debate. Another one, of course, is distributive justice: we all will go broke (except for those of us blessed with lots of spare cash), if we can't adopt a saner societal attitude about health care spending near death. That would mean starting to talk in public about the moral wrongness of allowing families and physicians to have whatever new treatment they want regardless of diminishing returns in mortality reduction. Sorry, palliative care can’t just be about patient choice.
2) A paradox, which really isn't according to neurophysiology, is that humans can simultaneously and strongly believe that a) people should accept that they're going to die if the evidence for it is overwhelming, and b) I cannot be dying, and I don't want to hear any evidence that it may be happening. When I was diagnosed with prostate cancer after dealing, pretty well I thought, with dying patients for 30 years, I was shocked by how different I felt about the prospect of my own death than I did about the deaths of others (although I have to admit I always wanted to know how I'd react). You can go home and have a glass of wine after that gut-wrenching family meeting, but when you're grappling with how badly your body has betrayed you by growing something lethal inside, it's tougher to escape. Our upper brain evolved to temper and modify the highly charged output of our limbic system, so the two often differ in outlook. How we feel determines our decisions to a far greater degree than what we think does (see my Twitter today), and when the two diverge, it looks a lot like paradox. Where we can fall short as physicians is to go all in for thinking, leaving feeling at the door -- hence overtreatment, no matter what it costs or how cruel it is. At the other extreme, when you’re dying at 32 of breast cancer, feeling takes over and thinking takes a back seat. This crazy whipsawing (because whatever we might have thought, we're drawn into the feelings in proportion to how much we identify with the patient's dilemma) may be where some of the sensation of "vertigo" comes from.
3) Underneath all this is a real, and perhaps an ultimate, paradox: that in situations where people are forced to wrestle with dying, and when we're willing to go there with them, we have a chance, if we can let go to it, to get beyond duality, to a place where deep grief (from the impending loss of everything in the world) and deep joy (from sharing the most intimate, courageous moments, the ones that make us proud to be human) are both happening at once, and (in my experience anyway) are indistinguishable. The only reasonable response to this situation is awe, which isn't "reasonable" at all. It's beyond reason, shading into mystery. Thinking about it must be done very carefully so as not to wreck it. It probably helps to go to that well again and again, which happens in our work, but also in any situation that invokes suffering and despair. At the bottom of that well, lying in darkness, is the water of life, the source of real spirituality, which is the only context for true paradox. However, here we're talking about Erikson's final stage of development, "ego integrity vs. despair." That's a step beyond what this patient was dealing with.
Sorry, didn't mean to be so long-winded. However, it's nice to have a chance to talk back & forth about these things.
April 07, 2010
Oh, gaze misdirected…. Anon 1 simply limits her/him/self to an observation that the tragic character has exposed a little secret of ours; and that hurts, doesn’t it? To palliate the interpretative exuberance of some of the early disputants, let us make the obvious plain: description ain’t prescription, how we counsel at the bedside is not under primary consideration in this strand, nor was it in the NYT piece. Rather, how we envision good and beauty, is. Only so anteriorly predicated, a focused medical care (that may be called patient centered and safe and efficient and optics-calibrated, matched-in-heaven, whatever branding the fearless leaders choose) can be offered.
But now off to a hydrothorax with pH low enough, and amylase curiously high, and mediastinum...
April 07, 2010
Brad - wow. Particularly #3. Well put.
Anon 2(pH/optics): I'm sorry, but...Huh?
April 07, 2010
April 07, 2010
@Drew RE: Anon 2
I got it! It's a poem!
A snide, condescending, dry, academic poem, but I can smell a poem, even from Haiti, across a narrow bandwidth.
April 08, 2010
Once again upon reading the first paragraphs in NYT, I experienced a well worn feeling of weariness at our oh so human tendency, shared by our profession and the media, to frame life as "either/or." This matter of "paradox," so eloquently addressed by Dr. Stuart, can also be seen as the highly developed functioning of the ego. In the course of hard experience, opportunity exists for growth at all stages of life, penultimately near the end of life. Such growth is always hard, often gruelingly so. The realm of growth beyond "ego" must be that of soul, in a crucible where categories fall away, opposites may unite and the mystery of healing opens.
A final thought pertains to how Dr. Pardi's powerful story shows again how impossible it is for any of us to walk in another's shoes. "What would you do, doc?" How can any of us know?
Brad Miller MD
Grass VAlley, CA
April 08, 2010
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
April 08, 2010
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
April 08, 2010
Rob -
Now that I've gotten over my initial speechlessness at reading, and re-reading your comments, a few reflections:
I was reading them thinking to myself gee this sounds like a very different story than the one I read, but wasn't Rob interviewed for the story? It seems you were, and I guess I shouldn't be surprised that what is represented in the news story is a very different than what occurred (and why) to people actually involved.
Thank you for sharing your experiences with us, and making it clearer why she made the choices she did.
Since I'm here, writing public comments on a public blog to Desiree's husband, I also want to say how weird this whole thing is: to be discussing the details of a colleague's life and death, in the open like this, and using it as a lens to look at our profession. We're doing this because there the story was on the front page of the NYT of course, making her life and death a lens into our profession (among other things), but still... I am curious as to what it is like for you (feel free to not answer that).
As I said on my original comment, I knew Desiree a little - we attended a retreat in Boston in March 2008 (I think). The retreat was for 'young palliative academic leaders.' Desiree was there with her chemo hair, but didn't talk about that. Instead she talked about her struggles/challenges in her program - the things we all were struggling with - leadership, mentors, department chiefs, etc. Very normal, and she talked like someone who was working on a long career....
So thanks for giving voice to Desiree that none of us, or the article, could, and for allowing us to battle out on the blog some of the tensions in our profession that the NYT article brought up. We love palliative care too, including the always-humbling opportunity to walk with those patients of ours who die.
Kindest regards, Drew.
April 08, 2010
What a privilege it is to be able to "listen in" on such an important discussion as this one. Thanks to to the founders of Pallimed for providing a forum where it can happen, and a special thanks to Robert Pardi for sharing what is a very personal and poignant perspective. We have much to learn from one another.
April 08, 2010
Rob,
I thank you for posting this reply which clarifies and adds many important details. It comes as no shock that the story of your wife's illness was twisted in an attempt to create a "good read" (although if told more accurately, I'm certain the story would have been even more compelling).
In the middle of grief, I can imagine that having this article published is surreal, especially in light of it's inadequacies. As you can imagine, the comments on this blog are just the tip of the iceberg; I've had several fruitful conversations about this article that I do believe have helped others learn about palliative care and I'm certain that is true for colleagues around the country. Your wife's experience is awe inspiring (as Brad Stuart suggests). With your wife's obvious dedication to her profession, most readers of this site will understand and appreciate her noble goal of sharing her story.
With great respect,
Lyle Fettig
April 08, 2010
Rob,
Thank you so much for posting here. As Drew, Lyle and Marty have already so eloquently stated, your words add so much more to this story.
I too have seen the NY Times article spur many discussion amongst my colleagues, even being the source of a self-care session for our fellowship this very morning focused around the theme of "What if it were me?"
Many people I have talked to about the article spoke almost immediately about the complexities existing beyond the printed word; something I find to be analogous to my personal interactions with a patient and family compared to my written medical note. Sure the note may dedicate a few sentences to 'coping mechanism' or 'fears and concerns' but the conversation and experience of communication holds a much deeper story.
With your permission Rob I would like to repost your comment as an original post on Pallimed because it deserves a far greater audience than being buried in the comments. But if you do not want this I understand and respect that as well. Email me at ctsinclair@gmail.com or comment here if you like.
Marty,
I know from many past conversations with Drew, that we feel the same about the larger community that has formed around Pallimed and feel that is where the greatest asset lies.
One of the interesting things about the creation of this post, was at first Lyle and I had discussed mentioning it briefly because we figured 'everybody in palliative care would have read it.' But in our emails back and forth we talked about focusing on a larger picture. I am very glad Lyle wrote the long form and not just an announcement. What has sprung forth has provided all of us with much more to think about.
April 08, 2010
As a long time reader of Pallimed, this will be my first comment. And I'm honored to say that it is this post, and that it is this subject matter, on which I choose to write my first comment.
As a pre-medicine student with a keen interest in hospice and palliative medicine as a subspecialty, I appreciated the insight that the article provided into the inner workings of the field. Dr. Pardi's perspective helped to shed light on the reasons why many who ask and get told that I would like to pursue a hospice and palliative medicine fellowship at some point give me a rather disjointed expression with a confused undertone.
Further, as a pre-medicine student challenged by the physical difficulties of cerebral palsy, Dr. Pardi's story is a reflection of my own and the reasons for which I have made the decision to pursue a career in medicine. Though I have never received palliative care services and am not yet a medical doctor, I know the complex that Dr. Pardi was facing with an almost eerie sense of clarity. There comes a time, whether at the end-of-life situation or after a procedure that's left a patient in the hospital for three nights, that the only realization you as a patient can come to is that your body is tired. Your body needs a break. Your mind needs to take a break from the action, and your heart needs a chance to beat in a normal rhythmic pattern. Often, the knowledge that this is the best thing for your own well-being at a certain moment in time is what leads to rejection of services. It is in no way a sign of disrespect to the physicians and their knowledge and skilled labor. It is an exercise of self-respect, and for that, Dr. Pardi should be applauded.
The situation at hand in Dr. Pardi's story also raises some interesting complexes in my mind regarding humanism in medicine. That is, we often forget that patients are people who live, who breathe, and who have feelings just as we do. Given the fact that medicine is such a scientifically based field by default, it is difficult for medical students and physicians to put aside the thought that the patient that is in front of them is simply a science experiment. It is a life. It has emotions, it has opinions, and it has beauty. Dr. Pardi's actions, in the eyes of a fellow patient, were simply those of self-respect, and for that, I couldn't applaud her more.
As mentioned, the reason that I have decided to pursue a career in medicine during the second semester of my undergraduate degree is magnificently illuminated in the telling of this story. Having not received medical training before my treatment as a patient began, I saw it from the other side. The authors of this blog helped me to see medicine as my tool, as my shield, and as my gift. And friends, colleagues, and fellow readers, in the eyes of a fellow patient, Dr. Pardi's message was simple: Why can't medical professionals be the ones to voice the opinions of our patients and show them just how much we care for them by respecting their thoughts, feelings, and sometimes actions?
I look forward to reading more of Pallimed and look forward to learning and growing with all of you to ensure that I have the well-rounded nature necessary for successful medical school admission.
Thank you, Lyle, for your effort in writing a compelling review to an amazingly luminous news piece!
April 09, 2010
Rob, thank you for sharing such an intimate part of your life story. I am sorry for your loss of Desiree and wish you peace and healing as you continue to deal with the aftermath from her death.
As I have told Christian many times this year, I have read the NYT articles with mixed feelings. While it is great that palliative care has finally gotten some major publicity, the messages sent in the articles have sometimes made me unsettled. It is as if one paragraph causes me to cheer and the next to groan as "good journalism" makes for "bad medicine".
Therefore, I think it is all the more important that those of us practicing in the field be up-to-date on the research/facts and figures about HPM and to take every opportunity to publicly comment (comments on blogs, letters to the editor, original works in journals)about our field. Facts help dispel some of the fear that myths create--I don't want my patients' only understanding of palliative care to be "third person", filtered through the writings of a journalist. It will take vigilance, and perhaps a little boldness, on our part as practitioners in the field of HPM to help make sure that good information is out there about the work we do each day.
Rob, thank you again for your gift by being willing to open up your life to advance our work.
April 11, 2010
so sad and poignant and timed seemingly by an omniscient hand to strike a match to the fuel building up in our field about the language and the reality of what we really do as palliative care professionals. to hear from cancer survivors and their loved ones, many in our profession, adds so much meaning to the discussion, especially mr. pardi's clarifications so generously expressed during his grief. anyway, i feel compelled to add just a small observation to this eloquent discussion. as each ill person approaching death and their families have to struggle with their values, goals, and wishes coming up against their limited survival and diminishing options, my experience is this:
those who CAN face reality, let go (NOT give up!), and accept untimely death (whether in days or months) DO BETTER. less suffering, more meaningful experiences. they live better and die better and leave their heartstricken loved ones with better memories and a lot of their grief work already done.
my question for rob pardi is: did desiree reach this point, and if so, why didn't she TRY to have some time of peace and rest and gentleness while she still could have that? it was painful to read what seemed like missed opportunities for grace and awe, as brad stuart so incisively describes.
thanks all, for helping my "vertigeousness" settle down with all your wisdom. wow! amen!
March 27, 2011
so sad and poignant and timed seemingly by an omniscient hand to strike a match to the fuel building up in our field about the language and the reality of what we really do as palliative care professionals. to hear from cancer survivors and their loved ones, many in our profession, adds so much meaning to the discussion, especially mr. pardi's clarifications so generously expressed during his grief. anyway, i feel compelled to add just a small observation to this eloquent discussion. as each ill person approaching death and their families have to struggle with their values, goals, and wishes coming up against their limited survival and diminishing options, my experience is this:
those who CAN face reality, let go (NOT give up!), and accept untimely death (whether in days or months) DO BETTER. less suffering, more meaningful experiences. they live better and die better and leave their heartstricken loved ones with better memories and a lot of their grief work already done.
my question for rob pardi is: did desiree reach this point, and if so, why didn't she TRY to have some time of peace and rest and gentleness while she still could have that? it was painful to read what seemed like missed opportunities for grace and awe, as brad stuart so incisively describes.
thanks all, for helping my "vertigeousness" settle down with all your wisdom. wow! amen!
March 27, 2011
I have always wondered what my death would be like as a palliative care physician. I'm 40, married with 3 small kids. Many gambits have run through my head.
I picture myself lying in bed after a day of chemo; lights off, bucket handy with a stale smell of vomit, and me, whispering with my eyes closed, "God, please don't let me die".
Like most of my patients, I'm in the intimate space of beholding sorrow and hope, simultaneously. It's a hard space to be in. Few people who aren't dying know this space. It's lonely.
I remember taking care of a physician. He was in his 40's, married, small kids. Multiple surgeries. Max XRT. Exhausted every chemo. Fired hospices.
He would insert his own IV's and debride his stoma with his scalpel. I remember the day he and his wife decided to stop TPN, finish up the last 2 bags. Tears in both there eyes, there was no place they would rather be than in that room together.
He was beholding hope and sorrow simultaneously the whole time, from self cannulating to self dc'ing. It's not easy to understand, spiritual the whole time. It's not a move from denial to acceptance. It's a space that moves.
The is no role for "forced awareness". In my fellowship, that was the running joke. I define my role as being in this well defined but difficult to enter space.
I wonder who will be there for me when it's my turn. Certainly no one from my palliative care team or hospice. My wife, no doubt. Hopefully also a professional from the outside.
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