December 27th, 2008 by Trisha Torrey
Over the past several months I’ve had the pleasure of getting to know Dr. Gregory Eastwood. He may claim he is retired, but that would hardly be true. He is the former president of SUNY Upstate Medical University and former interim president of Case Western Reserve University. Today he teaches bioethics and humanities to medical students. They will realize someday how lucky they were to have been guided by this gentle and learned man.
The opportunity to work with Dr. Eastwood comes about as part of the weekly radio show I host. We’ve begun a series of ethics conversations, airing monthly, tackling tough questions faced by patients and their families every day. Questions such as: How do we make end-of-life decisions for loved ones with diminished capacity (like Alzheimer’s disease)? Should we have the right, as autonomous human beings, to decide when we are ready to die? Should a woman who is pregnant with multiples be able to selectively reduce the number of fetuses when she knows they are all at risk because there are so many of them? Should doctors tell their patients how long they have to live?
See? Not easy to answer, not any of them….
As we worked on the next ethics show, the conversation turned to how physicians view their professions. The possibility that they start out in med school with very idealistic views of what that career will look like (saving lives and improving quality of life) to the realities of conducting business — dealing with insurance and time constraints and all those shackles their work ends up imposing.
The conversation turned to the Hippocratic Oath. That’s the oath we patients believe all our doctors took as they became MDs or DOs or whatever their title is… and most of us believe it includes the statement “First, do no harm.”
They don’t. And it doesn’t.
In fact, it turns out that different medical schools use different oaths. Not only that, many of them edit the oath their students take to fit… what? I’m not even sure. But the point is, especially when it comes to medical errors and the question about whether doctors should apologize for mistakes they have made, we patients cynically ask why they have violated that Hippocratic Oath — and it turns out they may not have even taken it.
Does that give physicians a free pass to make mistakes? Of course not! I just find it interesting that there’s one more assumption on the part of patients about the medical profession that isn’t true.
Upon further discussion with Dr. Eastwood we also learned that there is another oath which many students take, called the Oath of Maimonides. According to Dr. Eastwood, Maimonides was a physician, judge, and Jewish rabbi who lived in Muslim Egypt 1135-1204. He had a huge following and was very influential.
But — you’ve got to love this, too. The Oath of Maimonides wasn’t even written by Maimonides. It was likely written by a German physician, Marcus Herz (1747-1803).
This oath is lovely, lyrical, almost prayer-like and honestly quite moving. I bring it to you because I think you could print it, take it to your physician, and perhaps begin a conversation with him or her. A reminder of whatever oath your doctor took may cause him to pause for a moment and reorient himself to his reasons for choosing such a noble profession.
(Thanks to Dr. Eastwood for providing the following):
OATH OF MAIMONIDES
Thy eternal providence has appointed me to watch over the life and health of my fellow human beings.
May the love for my art actuate me at all times; may neither avarice nor miserliness, nor thirst for glory, or for great reputation engage my mind; for the enemies of truth and philanthropy could easily deceive me and make me forgetful of my lofty aim of doing good to my patients.
May I never see in the patient anything but a fellow creature of pain.
Grant me the strength, time, and opportunity, always to correct what I have acquired, always to extend its domain; for knowledge is immense and the spirit of man can extend infinitely to enrich itself daily with new requirements.
Today we can discover our errors of yesterday and tomorrow we may obtain a new light on what we think ourselves sure of today.
I have been appointed to watch over the life and death of my fellow human beings. Here am I ready for my vocation and now I turn unto my calling.
September 11th, 2008 by Trisha Torrey
It’s been awhile since I’ve posted. In that time I’ve been the Gramma-sitter for my two little grandsons while their new baby sister arrived (welcome Kyla Shay!), buried my ex-husband’s cremains (he died last April), spoken to two groups of patients, recorded two radio shows and finished my book proposal.
Enough excuses, you say!
But neither of these efforts, nor the emotions associated, can come close to the roller coaster Daniel’s family has ridden in the past nine months. Even those emotions pale in comparison to the relief they felt during the past week as they learned that, just like Heather’s story earlier this summer, and my story, too, Daniel doesn’t have SPTCL either.
Learn more about their discovery and the report from the NIH.
So. A h*ll of a track record in 3-1/2 months, wouldn’t you say? Three reports of subcutaneous panniculitis like t-cell lymphoma (SPTCL). Two of them aren’t even cancer.
I wish you could hear the song in my heart, and see my smile and tears of joy! If not one single other patient ever benefits from my work, then I will always know these two people – Heather, then Daniel — have been spared chemotherapy.
Pressing on. And OH so happy!!
July 25th, 2008 by Trisha Torrey
(The post below was put online this morning at 8:15 EDT. An update at 10 AM — Randy Pausch died this morning. My prayers are with his family.)
Because so many of you, my readers, have checked here to learn more about Randy Pausch, I bring to your attention a comment made by Claudia, one of you, on my February post.
Claudia tells us there is an update on Randy’s page, and he’s beginning to struggle further with his cancer. Here’s a link to the Randy Pausch Update Page. (and thanks for the heads up, Claudia.)
If you are not familiar with how hospice works, this is a great opportunity to learn about it. Just as we empowered patients learn about taking care of ourselves when we get sick and need medical care, it’s just as important to learn how to prepare to die.
Our well-being during the last few weeks or months of life, and both physically and emotionally, is supported during hospice care. Patients choose hospice care at the point where it no longer makes sense to pursue curative care. Hospice supports palliative care which means keeping the patient pain free and comfortable through the point of death. Learn more about hospice from my colleague Angela Morrow at About.com.
My prayers are for Randy’s comfort and peace, and just as important, his family’s comfort and peace during this time.
Read previous posts about Randy Pausch here.
PS — For those of you who have left comments on my blog for Randy — please know that I have NO idea if they ever get to him. I’m blogging about him out of my respect for how he has approached his disease and the lessons he has taught all of us. But whether or not he even knows this blog exists is a question mark. You are more than welcome to leave your comments here! But I don’t know if Randy sees them or not.
July 2nd, 2008 by Trisha Torrey
Here’s the good news: Heather does not have SPTCL.
Here’s the bad news: Heather does have another type of T-cell lymphoma called CGD-TCL, cutaneous gamma-delta t-cell lymphoma. Also written with Greek letters: cutaneous ?/? T-cell lymphoma
To say that both Heather and I were shocked is an understatement. If you read my post a few weeks ago, you know that she contacted me when she had a lump biopsied, and was told she had SPTCL (subcutaneous panniculitis-like T-cell lymphoma.) Thing is — like in my case four years ago — she has no other symptoms. Further, since then she has had additional tests, including a CT scan that shows no abnormalities, and blood work that is clear. So yes — shocked.
And, as if it’s not bad enough that she’s been dealt this blow — listen to this: when a review from the NIH is requested, the protocol is for it to be submitted by her primary care doctor or her oncologist, then for the NIH to report back to the doctor who requested the review. That doctor is then responsible for getting the results back to Heather.
Heather’s biopsy was submitted to Dr. Jaffe at the NIH in early June. When she hadn’t heard anything back by yesterday, almost a month later, she sent an email to Dr. Jaffe just asking when she could expect the results.
Turns out the review was completed June 18 — two weeks ago! — and returned to Heather’s doctor…. and yet no one — not the primary care doctor OR the oncologist has contacted Heather with the results. Still. Today. Not a single phone call. No one!
The reason Heather knows about her diagnosis is because Dr. Jaffe was considerate enough to attach it as a pdf to her reply email.
So we’ve learned a couple of lessons from Heather’s odyssey so far…. first, to be assertive about reviewing a diagnosis. Yes — it turns out Heather was misdiagnosed, too — although in this case, she does seem to have lymphoma. But if she had not pursued a review of her diagnosis, she would be treated for the wrong lymphoma. Then what?
Second — when you don’t get test results back — go looking for them! And don’t take no for an answer. You can be polite, but you need to be assertive. Had Heather not gotten in touch with Dr. Jaffe, she would still be waiting for the word. And as far as her doctors are concerned — she’s still waiting! (I’m having trouble stopping myself from calling these medical bozos what they are. Oh. Did I call them that?)
CGD-TCL is just as rare as SPTCL, no doubt about it. It will be impossible to find a doctor to treat it who has experience with it. I’ve suggested to Heather that she find a doctor who is willing to research and learn alongside her — a true partner for this unusual disease. Easier said than done, I’m sure! But what a blessing if she can actually find one.
If you’d like to follow Heather’s odyssey, I’ll keep you updated here… or better yet…. check out her new blog. Then, keep Heather and her family in your prayers.