Posts Tagged end of life care
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
Journals customarily publish letters to the editor responding to recent scientific articles, and much less often (if ever) do they allow comments on their humanities pieces. Yet on par with other types of academic work, a good narrative can educate, stimulate discussion and spark controversy.
In a recent Annals of Emergency Medicine, Dr. Leana Wen’s Change of Shift titled “Old” is a great humanities piece, honest and powerful. However, the case as described is deeply concerning, compelling me to respond.
A demented DNR/DNI patient presents to the ED in respiratory failure and is allowed to expire after a resident physician confirms the advanced directive and withholds non-invasive respiratory support on the request of the health care proxy.
The story is a true-to-life documentary of a thoughtful and caring clinician’s deference to advanced directives and family’s wishes. Readers might even celebrate this example of “death with dignity” in the
ED with family present and patient’s spirituality respected.
I would agree, if not for the issue of autonomy.
“Help… me… breathe…” the patient begs the resident upon arrival. At that moment, it seemed clear that the patient chose to receive non-invasive ventilatory support until further clarification. Did his age, DNI status and reported dementia invalidate his apparently lucid demand?
The resident discontinues the BIPAP upon the request of an “adamant” niece. A dialogue between the resident, her ED attending and the niece about efficacy, comfort, non-invasiveness and reversibility of
BIPAP was left entirely out of the narrative, hopefully to save print space and not because it did not occur.
I must applaud this physician’s efforts to understand the patient’s life, medical history and spirituality; however I wish the patient’s most up-to-date directives were not ignored.
A narrative such as this does more than tell a story; it implicitly teaches clinical norms and limits. I am concerned that the next generation of doctors will learn to simply allow a DNI paper and a health care proxy to overrule a human being pleading for a breath.
To me, a situation this complex warrants a presentation of more complex decision-making process than the one described in “Old.”
Some may say this is too much to ask of a narrative. I would respond that narrative have a power to change hearts and minds; a power that comes with a responsibility to the reader.
Boris D. Veysman, M.D.
University of Medicine and Dentistry of New Jersey
Robert Wood Johnson Medical School, New Brunswick, NJ
Aggressive palliative care is just as important as aggressive critical care in the ED. Sometimes we will be the first physicians to talk to a family about end of life issues, even if their loved one is terminally ill. Now that is not how it should be, but it just means that we must be just as skilled at family palliative care discussions as we are at floating a transvenous pacer. In this podcast, I discuss my vision of how to handle palliative care issues in the ED.
Photo by P Nicholson