Diseases, Deaths, and the Celebrity Effect

The world loves its celebrities, whether they be from sports, entertainment, or politics, or they're just famous for being famous. The celebrities rake in the money that many mere mortals are willing to pay so they can catch a glimpse of fame. Some of the celebrities embrace this adoration and use it to further causes they believe in, some mock it, and yet others try to live below the radar, avoiding the extra attention sent their way.

The attention focuses on, among other things, how celebrities live their lives, what they eat or don't eat, if they vaccinate or don't vaccinate, and what surgeries or procedures they may have had to keep their youthful look. But what fascinates is me the times when members of the public takes these celebrities as experts.  It's one thing to want to know what someone is wearing or how they decorate their home, but it's another to think that their celebrity makes them an expert on anything other than maybe being a celebrity. Is Gwyneth Paltrow really a nutrition and detox expert, or Jenny McCarthy an expert on vaccinations and autism?

And then there is the subject their health. When a celebrity announces a battle with an illness, their fans take notice and this drives awareness of conditions that may otherwise go unknown or misunderstood. Look at Angelina Jolie, and her decision to have a prophylactic double mastectomy and removal of her ovaries. She did this because she has a genetic mutation that greatly increases her risks of developing those cancers. This action and the publicity resulted in the Angelina effect, with many women with the same gene wondering if they should do the same thing - and experts appeared in all forms of media debating her approach.

Other celebrities who shared their battles with chronic diseases include:

• Selena Gomez:  lupus.
• Charlie Sheen: HIV
• Montel Williams: multiple sclerosis 
• Tom Hanks: type 2 diabetes
• Michael J. Fox: Parkinson's disease
• Jimmy Carter: melanoma

Just last Friday, we lost another celebrity, a world-wide celebrity, to illness: Muhammed Ali. He, too, had Parkinson's disease, but his death was caused by septic shock. Patty Duke died in March from the same cause. (Disclaimer: I am content director for Sepsis Alliance, when sepsis or septic shock is listed as cause of death, it always attracts my attention.)

When celebrities or their families disclose illnesses or causes of death, this starts a conversation about them. How many people, particularly those in the age group who love Selena Gomez, had ever heard of lupus? How many people thought that HIV was still a problem in 2016? Before Michael J. Fox and Muhammed Ali announced they had Parkinson's disease, how many people realized it could affect people so young? And what about the educational benefits that came out from President Carter's announcement that he was undergoing immunotherapy for his cancer? 

I've read a few article comments and social media messages saying that the media shouldn't be writing about or playing up the illnesses after celebrities die, that they should be remembered for their roles in our society. But can't raising awareness of these illnesses be one of those roles? Is using that information taking advantage of the situation?

I believe that if celebrities or their families choose to disclose their health battles, then the idea was to help raise awareness - and that is a good thing. All diseases or conditions that affect our quality of life or that lead to an early death are important. But they don't all have the same amount of air time, of awareness. And if the news of one celebrity with one illness can change things, can help someone go for a diagnosis or maybe not feel so alone, then I think it's a good thing.

Will Prince's Death from a Fentanyl Overdose Change Anything?

To say that the death of Prince a few weeks ago was a shock to the music community would be an understatement. To be honest, I wasn't all that familiar with his music - or so I thought. As I read the ensuing articles and Facebook posts, I came to appreciate the impact this man had on our collective musical soul, a man who was taken much too early.

It's a familiar story, his cause of death - an unintentional drug over dose. In this case, it was the pain killer Fentanyl. Too many people have been killed by unintentional drug overdoses. And every time it's someone famous or influential, there is hand wringing and there are calls for greater control of these potentially deadly medicines, and that things need to change. But what things?

When I worked as a nurse in hospice, Fentanyl was the drug of choice for many of my patients to help relieve the severe pain that end-stage cancer can cause. I saw the difference in my patients before and after they received the medication, misery before, relief after. My mother was on Fentanyl for chronic pain for many years, pain from spinal stenosis. It was the only medication that provided any type of relief and the fact that it was a patch that could last days, not hours, was a huge bonus. But, like many such drugs, there's a dark side to Fentanyl. It is addictive. Very addictive.

So, we have a medication that can help a person live life with less pain and a drug that can destroy a life. Where do we find a balance? And is there a balance?

It's already very difficult for some people with pain to get adequate pain relief. Some doctors are afraid of prescribing such powerful drugs, preferring to err on the side of caution, so they think. So the patients suffer, or look for another doctor. They run the risk of being accused of doctor shopping.

When patients do have a prescription, seeking renewals can be a nightmare; they may be treated like drug-seekers. If these patients present at emergency departments because they are desperate, some staff members don't believe that the pain is real. Some pharmacies don't even carry adequate amounts of the pain killers, if at all.

If we "tighten up" access to these drugs even more, where are those who need the drugs going to get them? Yet, we can't deny the seriousness of the issue of drug abuse. We can't ignore that people are becoming addicted to these drugs and lives are being destroyed because of them.

So, will Prince's death change anything? It's doubtful. If it does, I fear that it will make these medications even harder for people to obtain to relieve their pain. Is there a solution? There has to be. But what?

Old News: Noise in Hospitals Disturbs Patients

If you've ever been a patient in a hospital, you know that hospitals are not where you go to rest. And if you happen to have a room next to a nursing station or the entry to the unit or floor,  you're even worse off because of all the noise.

Even as a young nurse, I was aware that noise was an issue, particularly during the night shifts. I tried to speak at a lower level and not move around the rooms as much if I could avoid it. But, patient care still needed to be done and I found myself often waking patients so I could do certain procedures or give medications. I would feel so bad for the patients who had just finally fallen asleep, only to have me wake them up.

I had my three children at the same hospital, and the first two times, I was placed in a room right across from the nursing station. That experience opened my eyes. I got no rest. People were constantly walking past my room, rolling noisy carts and chatting with others. Some people would be calling up the hallway to colleagues as they asked or answered questions. The phone would ring all day long and staff members of all stripes would gather at the station, particularly at the change of shift. It was N.O.I.S.Y. Even with the door closed, I was disturbed. Night time was quieter, but there was still chatter and the noise of all the call bells that would go off all night long. It was anything but restful. I lucked out with my third child though - I was given the last room at the end of the hall. It was so quiet, it was like I was in a different place altogether.

The thing is, we already know that hospitals aren't restful places and that they're noisy. Researchers have been studying this - although they really just needed to speak to some patients to find out. But at least now, they're taking the noise seriously. There was a study presented at a conference earlier this month, showing how loud an intensive care unit can be, Quiet please in the intensive care unit! As a former ICU nurse, I could relate.

What does this all mean? It's hard to say. Patients are limited in power. They could ask to have doors closed, but they can't do anything about the alarms and the need for healthcare staff to communicate with each other in the halls. They also can't do anything about room placements or if they are near a hub of activity.

Hopefully continued research like this ICU one may change some policies - changing how alarms are used and instituting quiet times, when noisy activities stop and patients are encouraged to rest are a good start. Some facilities are already doing this. We know we need sleep to heal, to get better. The thing is figuring out how to provide it in the hospital environment.

Surgeons Perform Penis Transplant, Story Comments Go Wild

It's the nature of the Internet beast. Write "penis" in a headline and you're almost sure get more clicks than usual. Add "transplant," and curiosity will likely get the best of many people.

Last week, surgeons at Massachusetts General Hospital in Boston announced that they had performed the world's third penis transplant, the first done in the U.S. According to the news reports I read, there had been two previous attempts elsewhere - one successful and one not. I have to admit, I admire the bravery of the patient, Thomas Manning, who allowed his team to go public with the news of the surgery, although I suspect that it was part of the deal when they offered to do it, picking up the costs at the same time.

Sure, it's easy to giggle or snicker when one thinks of a penis transplant, and people of a certain age may think of the Bobbitt case, where the angry wife decided to amputate her husband's penis. But in all seriousness, this could be a major breakthrough to men who are injured or who are affected by cancer that requires amputations.

Sure, a penis is not a required part of the body, like the heart, the liver, kidneys, lungs and so on. It's used to transport urine and semen - and urine can be directed from the bladder through other methods. But that doesn't mean it doesn't have a vital role in life and in quality of life. Just as many women who have mastectomies go on to have reconstructive surgery, men may want/need that as well for their own psychological well-being. The difference is transplantation of a penis, with all that's involved, is a trickier and more intensive procedure - and probably considerably more expensive. In addition to the issue of obtaining the cadaver donations to be able to perform the surgery at all, another difference is a man who has a transplant will have to take antirejection drugs, while a woman who had breast reconstruction doesn't face that particular drug regimen, with its associated risks.

What is interesting about this whole thing though is the reaction of people to the news. Some feel it is a waste of time, while others applaud the research and learning that goes into it - after all, medicine and research don't live in a vacuum. Information gleaned from research in one area is often transferable to another. Some commenters make sick jokes, while others say that while this is all good, they don't want to read about a man's penis in the news. I wonder if they feel the same way about articles that discuss better ways for breast reconstruction (just wondering).

Finally, I have to admit, my eyebrows did raise a touch when I first heard the story. But the man had cancer. He survived it. Why would he not want to be as whole as possible again? Plans are for future transplants for men who have been injured in combat or who had traumatic car accidents.

For those who are saying that the surgeons and researchers should be looking at "more important" things, who decides what is more important? And, who is to say what they learn here can't be somehow used to help you one day for another health or medical problem?

There shouldn't be, in my opinion, a "it's either this or that" in research. There is room for so much of it. I wish Mr. Manning well, with smooth recovery and a happy, cancer-free life.

New York Times: Man Receives First Penis Transplant
CBS: Penis transplant glad to be a "complete" man