Friday, July 31, 2009

Death Etiquette

Is there such a thing as death etiquette? If not, there certainly should be. Too many of us just have no clue what to say when someone is ill or has a recently deceased family member. 

A mortality-related etiquette question from this week's Social Q's column in the New York Times.  

"Did He Just Say That?

My mom was found to have stage III ovarian cancer. We’ve been moved by the many notes of support we’ve received. But one comment caught us off guard: Not long after my mother finished chemotherapy, the husband of an old friend asked, “What’s it like being so close to death?” What should we have said?

Anonymous, New York

Make that three sure bets in this world (to go with death and taxes). Sometime or another, we all say the worst thing at the worst moment.

I hope your mother wasn’t too upset.

Depending on the closeness of the gathering, and your mother’s mood that night, she (or you, if she was too dumbstruck) could have shared some of her feelings or replied that she was focusing on happier prospects. She might even have made the ultimate point: Cancer may have put a finer point on her mortality, but that doesn’t mean that you, I or Mr. Foot-in-Mouth know any better when ours will strike."

Thursday, July 30, 2009

Fran Johns has a new blog

A sign of how out of the loop I've been lately (due to a cross-country move), Fran Johns has a new blog, and it's taken me a month to notice. 

But enough about me: The blog is excellent. 

Fran focuses on issues facing the elderly, and Baby Boomers who have elderly parents. The current post shares the thoughts of a retired California physician on Death with Dignity now that he is facing his own mortality. It's amazing! 

Other posts address housing options for seniors and palliative care. 

The site doesn't load real well format-wise on my Mac computer, but it looks like the site is still in beta testing, and it's worth bearing with any format issues to get to the content. Fran is one of my favorite writers in the blogosphere, and I try to read every word she posts. Trust me; she's that good. 

Email from a Cancer "Survivor"

The following is an email that I received from a cancer patient named Georgiana. I am publishing it with her permission, although I tried to remove identifying characteristics, I am leaving the remainder of the email unedited. Georgiana, my apologies for taking so long to get this up on the blog. 

I hope you find her words as valuable as I do. Georgiana mentioned to me that she is considering starting her own blog, and I really wish she would because she definitely has a perspective and a story to share. 

"I am Georgiana McAdams, a 67 year old mother of 4 widely scattered children and a supportive,loving husband of 45 years. In 9-05 I was diagnosed with stage 1V rectal cancer - pathology from resection surgery showed progression to the liver. After a visit to -- Cancer Center and literally hundreds of hours of research into my particular cancer, I opted for nothing more than palliative care with an oncologist. No chemo - no radiation - nothing. I should mention I am not a professional, but have studied medicine passionately for many years. Currently I am entering "the big adventure" and uncharted territory as my liver functions are deteriorating and I have ascites and ankle swelling (being managed). I fully know what to expect right down to the very end and am in total acceptance. It's the little things that get you down - not fitting into your favorite jeans - or finding your favorite shoes are too small due to fluid accumulation, pain when bending due to tumor pressure, etc. I also have a small tumor in my left lung now. However, -- (Cancer Center) gave me 6-9 months in Jan. of '06 and my oncologist, based on current labs, says about 6 months now - that was in March. I think I will make it a little longer. Main point is my surgeon, oncologist and PCP will
tell you I gave myself a better QOL than they could have. I should also mention I broke my shoulder 2 years ago
and last June broke my hip (pinned). While I am slower I still manage to get out most days. I am ready for hospice
whenever it comes and have my family fully educated on what to expect so that there will be no undue hysteria
over what will be the normal process of dying. Please understand I am not advocating my choices for anyone else - it simply was the right one for me despite medical pressure in the beginning to do otherwise. My dilemma is communication with other people who see me as giving up the fight (although any doctor I talk to says they would do it my way) or simply not discussing the horrid, big "C" word. We really do need to change our views about death and the dying process. It is a normal and totally natural conclusion. I  currently know several people who have lost a loved one and in each case, there were last ditch, invasive procedures, costly moves to yet another trial center, etc.  These poor people should have simply been brought home and left to die in peace surrounded by supportive family. I am actually looking forward to hospice as then there will be the opportunity to talk it all out with someone who understands from a medical viewpoint. Lord knows, my poor husband has willing suffered
through too many hours of this and I just refuse to burden him further. He has heavy cardiac problems and is a doll nevertheless. Our local Cancer Support Group is a joke and again no one seems to understand my position of "do nothing". They say once you have cancer, a day will not go by without you thinking about it. Well, I can actually forget it for a week or two, although daily I have pain issues in various places, but I don't think cancer pain, I think shoulder pain (tumors pressing on the diaphragm) or abdominal pain or leg pain, etc.  I am absolutely sure that if
I had opted for chemo, followed by liver resection (Not even sure I was a candidate due to location of tumors) and then hepatic artery infusion, I would have been long gone.  Instead I have had over 3 and 1/2 years of decent QOL, if not prime.  There are always "new normals".  There was a time when you were considered a survivor if there was NED after 5 years. I understand that now you are a survivor if you have cancer and are still alive. How can I possibly
consider myself a survivor? It simply isn't to be and that's really O.K. ... I am doing my
best to educate people, where I can."

Thursday, July 16, 2009

Michael Jackson Cupcake

I was just in Austin, Texas, and of course found my way to the local cupcake shop, Hey Cupcake. One of Hey Cupcake's specialties is the Michael Jackson cupcake. They have had this item on their menu for years. What is it? A chocolate cupcake with cream cheese frosting. Get it? It's both black and white, playing on Michael Jackson's confused racial complexion. 

After his recent passing, Hey Cupcake was apparently worried that they might need to take the item off of their menu out of respect for Jackson. But surprisingly to them, sales went through the roof. People were buying the cupcake out of tribute to Jackson. Even though it was a joke item, patrons see it as a way to recognize him instead of being tacky. 

Tuesday, July 7, 2009

Mourning Public Figures

Inspired by the public tribute to Michael Jackson, the New York Times has put together this video on the history of public funerals and viewings

The introduction articulately states: "Memorials for public figures are equal parts mourning, celebration and spectacle." 

Thursday, July 2, 2009

Potential Major Changes in the Use of Pain Medicine

The Diane Rehm show has a great episode today on a recent recommendations to the FDA on a scale-back of the safe dosage of acetaminophen.

It's not directly related to end-of-life issues ... but two painkillers, Percocet and Vicodin, do include acetaminophen, and they are sometimes used in palliative care. And, one of the recommendations made to the FDA was to ban Percocet and Vidodin.

I'm posting the link because it's an excellent hour of radio and an important issue for everyone to stay informed on. 

If for no other reason than who hasn't taken two tylenol or two Excedrin when they had a headache? And an interesting tidbit from these recommendations: two pills at once may be too much acetaminophen for your liver to healthfully process. 

Yemeni Flight's Lone Survivor

I am fascinated by the story of the 14-year-old woman who has turned out to be the lone survivor of the recent Yemeni airplane crash.

It's absolutely amazing to me that one, singular person could come out alive while 153 others died. 

Of course luck and chance must have played a role in her survival. But I can't help but think of Amanda Ripley's wondeful book, The Unthinkable: Who Survives When Disaster Strikes. In this book, Ripley researches the thought-processes and brain chemistry of people who are able to survive major disasters. I just can't get away from the thought that there must be something outstanding about this young woman.   

I wonder what it is about this girl that makes her such a survivor. Her uncle has stated that she had a broken collar bone, had hit her head, had burns to her knees, and still managed to cling to plane wreckage for hours. According to one report, it was 13.5 hours. 

Palliative Care Grand Rounds, Volume 1, Issue 6

This month's edition of Palliative Care Grand Rounds is now up at Tim Cousounis' blog Palliative Care Success

It offers a great look at what has been happening in the blogosphere this past month regarding end-of-life issues. And he very appropriately begins it within the framework of health-care reform and bioethics discussions ... because isn't that what's on everyone's mind right now?

Please take a few moments to check it out.