Posts Tagged end of life

My Story

ACEP Palliative Medicine SectionPlease send your stories to Tracy Napper at tnapper@acep.org.

In all my career, I never met a patient that taught me so much as Staci. Staci, a 25-year-old business owner who presented with headache. A very routine case. You see, she has had similar headaches before. Strong family history of migraines. Her headaches usually get better with Excedrin but every once in a while comes to the ED for compazine or reglan with benadryl. This was no different this time. Normal exam, photophobia, no neck stiffness. She was treated in the usual fashion and felt much improved. She went home and smiled as she said thanks and good night. The next day Staci had more pain, worse than before. Imaging was done and the radiologist saw something suspicious. MRI showed a tumor. It had the classic appearance of the last thing you want to hear. After a workup, biopsy, and surgery she awoke on October 14, 2009 in the recovery room very cheerful and told everyone around her how much she appreciated the care she received. In the days that followed she was aware of her diagnosis of brain cancer. The neurosurgeons got all of it but wanted her to have chemotherapy, just to make sure.

At St. Joseph’s there was concern about long lengths of stay and tremendous cost of EOL care. The Dartmouth study came out showing NJ as the state with the highest cost for end of life care. I had continued my interest and was on EOL committees and involved with the local hospice. I had plans to take the palliative medicine boards being offered about one year later, in November 2010.

A month later Staci came in to the ED. She again had headaches. She was getting the chemotherapy. When I spoke to her the first thing she said was thanks for caring about me. Her neurosurgeon asked her to come back to the hospital and see what was going on. A CT showed post-op changes and mass effect. I felt comfortable telling her the tumor was back. I explained that the path report showed a highly aggressive tumor. I explained that some people don’t survive this. I asked her if she had been told this before. She said never. I was horrified. What have I done? She made me feel better when she then said that no one told her but she knew she got her medical record and knows she has a glioblastoma. She knew she would take a trip soon She didn’t know when See, Staci would say she was dying, she insisted she was taking a trip to Milan. She was waiting for her doctors to confirm it. They told her it doesn’t matter what it is – focus on the treatment.

Staci was scheduled for surgery just after Thanksgiving. She had been in the ED twice for pain. Every time we spoke she said thanks. She said she made goals to spend Christmas with her family. She knew she could do it.

Staci’s surgery went well medically but the tumor had grown much faster than they thought. She would not leave the hospital. She was going to be admitted to inpatient hospice. Well, that’s what the surgeons and oncologist said.

December 11th Staci painted her nails stiletto red and signed out of the hospital AMA.

Over the next 14 days she put her life in order. She sold her business and took care of all financial issues, made arrangements for her pets and had plans for her clothes and furnishings to be donated to a women’s shelter. She put her house on the market and decorated it for Christmas. She even bought Christmas presents. Wrote notes to her nieces and watch her favorite basketball team with her dad. Her health continued to decline but her pain and non-pain symptoms were well controlled. She told me she was going to make it to Christmas but not to New Year’s. On the 23rd she wrote the 22 things you must do before you die. Staci slept most of the 24th and couldn’t have Christmas Eve dinner with her family. She wasn’t upset about this. She couldn’t eat anyway. She was saving her energy for the 25th. Her nieces woke her at 5am. Late on the evening of the 25th she told me it was the best Christmas ever. Her mom and dad were there, her nieces and all those she cared about . She was ready for her trip, she said. I asked her when she was leaving. She said in a couple days. I last heard from her on the morning of Dec 28th. She said goodbye and thanks. She asked me to share her list of the 22 things to do before you die. She died in her sleep that night.

22 things to do before you die:

Tell people that you love that you love them.

Plan your flight (will, burial, monies, belongings…..) dot the “i’s” and cross the “T’s.”

Keep Pushing … what’s the worst that can happen?

Don’t worry about things you never had a chance to do. Cherish the things you did.

Find a way to laugh.

Give hope to those still in the fight.

Run up your credit cards, Banks are the last to know.

Acknowledge the people who are close to you will be sad and think it’s not fair;.comforting them for some reason comforts you.

Make peace with friend and foe.

Cover your mirrors … don’t dwell on how you look now. What you see in the mirror is cancer, that’s not you

It’s OK to cry even if you tell others not to.

Take care of your pets. They love you unconditionally. Leave plenty of food and water out for them because friends and family will forget to feed them.

If there are children or loved ones write a letter in words they can understand.

Record an audio message; videos show death but your voice doesn’t have to reflect that.

Keep in mind that no parent nor spouse wants to watch you die; comfort them. Let them know it’s not their fault. They will never forget that conversation.

Live your life and live your death like a Dr Seuss book, “I will never say, I wish I would have could have!”

Keep pushing; drink Red Bull. You have plenty of time to sleep when you are dead.

Support groups are fine – BUT – having one true friend listening is like Mastercard commercials: Priceless.

Die at home if possible. Sign out of the hospital. Don’t turn your home into a morgue; have as little medical equipment as possible.

Believe in things that are out of sight – Santa Claus, flying reindeer, virgins have babies, and me!

Don’t let a scared family member call 911.

Know when to give up your car keys.

On Jan 7th St. Joseph’s started an ED-based palliative medicine program and Palliative Care Emergency Center. We have treated and cared for more than 300 EOL patients in the first 18 months.

Thank you, Staci.

Mark S Rosenberg, DO, MBA, FACEP, FACOEP-D
Chairman, Department of Emergency Medicine
Geriatric Emergency Medicine and Palliative Medicine
St. Joseph’s Healthcare System
Paterson, NJ
973.224.0570
stjosephshealth.org

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The Electronic DNR: Epic Fail

A screenshot from Google Health.

A screenshot from Google Health.

I applaud Google for trying to bring medicine into the 21st century with things like Google Health and Google Scholar; somebody’s gotta try. But their latest addition shows how even a huge organization full of hugely intelligent people can get something wrong in health care, because our world is simply a different beast.

Last week Google announced that it was making it easier to complete, upload, and store your own Advance Directive on Google Health. They even worked with an advance directive organization to have free advance directive forms for all the 50 states. (Warning #1 right there: things are different in all 50 states.)

They then go on to talk about how easy it is to “share your Google Health profile with your doctor, your family, or anyone you like.” And voila, epic fail.

Great, I say, that a patient can share his or her own medical information with loved ones or one’s doctor (more on electronic medical records and personal health records in another post). But these advance directives are not available in a searchable database by, say, name or date of birth. I’d argue that as Emergency Physicians, there are few people who need to know a patient’s code status more; perhaps intensivists, but the vast majority of patients going to an ICU setting who are going to need intubation are already intubated when arrive in the unit, and they’re going to stay that way. It’s a vast minority that get intubated in the ICU.

Our critically ill patients are usually so critically ill they’re not able to be speak, or they’re altered, or too somnolent to be thinking correctly, let alone be able to type and remember their login to Google Health. Or they’re technically DNR/DNI, but they have a family member that says do everything, and another that says “no, don’t,” and no one has any paperwork for anything. Or their DNR form isn’t valid, or they’re from another state, or their health care proxy isn’t available.

Or, say in a perfect world, you get a computer nerd online dweeb (say, me in 60 years) who has everything online and shareable with the world at large. Is the physician going to spend their precious time trying to login to a website to find out if the patient is DNR/DNI if they don’t know already, or is she going to try to review my medications, medical conditions, run through my differential diagnosis, assess my airway, and get oxygen, suction, and intubation supplies ready at the bedside?

We just recently had a case of a woman who was DNR/DNI for many years who was found in respiratory distress by the home health aide at 2am but who didn’t know the patient was DNR/DNI and couldn’t find any of the paperwork. So EMS intubated her. It was a frustrating situation for all of us–EMS, the ED staff, the patient’s family–but what was EMS to do? A perfect illustration of best-made plans falling through when things get stressful. (Luckily she was in flash pulmonary edema, and after a nitro drip we were able to extubate her in the ED.)

Look, I’m just about as techie and computer-friendly and live-your-life-online as anyone out there, but a lot of this stuff isn’t well thought-out, isn’t safe, and has no guarantees. So, Google–and emergency medicine and health care as a whole–we’ve got some work to do if we’re ever going to figure out the advance directive (and even more to take it online):

  • Make a central clearinghouse. Is it going to be Google Health, or the US Living Will Registry, or some government entity? Who knows, but the only people who you really need to know about your code status are your family members and health care providers who may want to code you or intubate you. I’m not going to spend precious minutes searching through multiple websites (or possibly any) to figure out where you’ve stored your online code status.
  • Confirm the patient’s identity. So all I need to know is your Google password, and I can upload a DNR form and forge your signature? (Because really, if you’re altered and septic, I’m not going to be able to verify your signature.) Scary.
  • Guarantee that the online forms that are uploaded are legally binding or accurate. I don’t know how we do this, but we usually want an original copy to initiate an DNR/DNI order, not a copy–and certainly not an uploaded duplicate.
  • Somehow confirm that the DNR order is the most recent. Sure, it’s great to have the information available online, but what if the copy is 3 years out of date and the patient changed their mind 2 years ago and is now full code, yet the only information we have available says “DNR?” That certainly seems suboptimal as well.
  • Decide if we should even have advance directives. Some argue that they’re a waste of time and energy, when they real time should be spent letting your loved ones (and especially your health care proxy) know your wishes. If we’re not legally protected to follow advance directives (a dead patient isn’t going to sue us, but a grieving relative sure can), it’s sure difficult not to listen to that relative telling you to “do everything.”

I’m all about end-of-life care and palliative care and actually believe we don’t do enough of it in the emergency department (but how can we?), but I’m still not sold on the advance directive if it has little-to-no legal weight behind it, and I’m even less impressed by Google’s online attempt.

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