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Relationships with strangers at the heart of being a doctor

By Dr. Alice Chen
. 3 Comment(s)

I’ll never forget one of the couples I took care of as a fourth-year medical student.  The wife was a beautiful, petite, white-haired marble sculptor.  She was a dreamer and had a twinkle in her eye even as she laid in her hospital bed.  Her husband was a well-build stoic engineer originally from Germany.  He sat at her bedside reading her the paper, caring for his wife of over 50 years with the love of a young man and the devotion of a lifetime together.

She was in the final months of her struggle with breast cancer.  They spent every day together in the hospital.  With a generosity of people who have loved deeply, they let me into their life.  I spent afternoons sitting at my patient’s bedside listening to their stories of how they managed to be in love after so many years. 

One day, she took my hand and told me that the one thing she wanted most in the world was to see her granddaughter again.  They had a 3-year-old granddaughter in Florida who was the embodiment of joy for both of them.  But they hadn’t seen her or heard from her in months.  Their only daughter had fallen into a troubled marriage, and their son-in-law had convinced her to cut off all communication with them.   Phone calls went unreturned, and gifts came back in the mail unopened.  But still, their love for their daughter and granddaughter never waned.  Not one bit. 

Though I briefly contemplated flying to Florida to talk some sense into their daughter, I knew I did not have the power to make things perfect for my patient.  I could not bring their daughter and granddaughter back into their lives, nor could I give her ten more years of life with her husband.  

But I could ease her symptoms and help fend off complications so they could spend more time at home together.  I could make sure they knew that to me, they were not a list of pathology and medications and laboratory results, but a beautiful pair of human beings who had so much wisdom to share with a young medical student.

To this day, I picture their room with a magical glow created by their relationship and their kindness.  The same glow in ever changing hues is the heart of medicine, the profession I love despite its warts and challenges.  It is the glow of a care partner who finds time in her afternoon to give a manicure to a patient with unexplained severe weakness in her arms and legs who longs to go home to her 4-year-old son.  It’s the glow of a nurse hugging patients goodbye as they wheel out the hospital homeward bound. 

We often think and write about our health care system as glitzy pharmaceutical ads and the bottom line and state budgets and the count of votes in Congress.  But in this holiday season, we are reminded as we are every year that one of the most important and fundamental things in life is the relationships we form with family, friends, and even perfect strangers.  In medicine, we have the privilege of being let into patients’ worlds at their darkest hour and helping them through to the best of our ability.

To all who serve patients and all the patients who allow us to care for you, thank you for being a part of something worth fighting for – a kinder, more compassionate, more innovative and wondrous health care system where the heart of it all is our care for one another.

To everyone in the Doctors for America community, thank you for daring to care, for challenging the way things are, for dreaming about the way things should be, for taking action in the face of uncertainty, for being a part of what makes me proud to be a doctor today and every day.

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  1. Nancy's daughter

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    At Christmas now I think back to a few years ago, well...more than a few now, but not enough to be called "many" either. Anyway, the previous June my mother had gone home from work, sick with GI distress. The following day she was admitted to the hospital with pancreatitis. By August we knew that it was terminal. My mother and I had discussed the difficulties of making decisions for a loved one that was no longer in a position to voice their own preferences after a highly publicized trial about a woman whose family were arguing about what to do with her. When I was in college, we had discussed the various instruments available for people to communicatae their own desires, and having been newly divorced, with two young children, I had created a Living Will of my own and chosen a friend to have the job of Medical Power of Attorney. My mother and I discussed it, and she agreed with my decision and was relieved that she would never be the one responsible for having to "pull the plug" on her daughter. We also had discussed about her own decisions and she decided to write up the same paperwork for herself. She selected me to have the responsibility of Medical Power of Attorney. We then forgot about it... Until the time came for these to take effect, and the job that I had agreed to was now required to be done.

    So, by Thanksgiving in November, my mother was on chemo and we started hospice. Something, we don't know what, had happened and her vocal folds had become paralyzed-shut. She was trached. The steady decline continued until she was unable to eat or take water, and we gut a PEG tube in for nourishment and medications.

    The chemo helped with the pain related to her cancer, but she also had Ehlers Danlos Syndrome and had been through 2 repair surgeries on her shoulder, but it was reinjured and was causing her severe pain, she needed morphine for that.

    We all knew that this was her last Christmas. She took her chemo 3 days before, and we hoped that this one would be an easy one where she did not suffer dehydration from vomiting and nausea. My children went to their father's house the day before Christmas Eve and I sent to my mother's, I was going to make this the most spectacular Christmas anyone had ever experienced...at least as much as I was able to. I baked and cooked for days, fortunately, the weather was super helpful and I was able to use coolers set outside as supplimentary refrigeration. I got out my grandmother's silver and drug it to my mother's house, we used the fine china and the real napkins (which I had to iron). I did everything I could to make it look easy and like no big deal, it helped that mom slept a lot.

    Christmas eve, and mom was still not recovering from the chemo like we had hoped. We had learned that this meant that she needed to have IV rehydration. We had not been able to get in front of the dehydration, and now we needed to get it taken care of... I asked her about going to the ER, she did not want to because she woudl miss Christmas. I promised her that I would do everything in my pwoer, limited as it was, to get her home for Christmas. We headed to the hospital.

    I still think that it was a miracle, but when we got there, the doctor in charge of her care happened to be a friend of mine, our sons were ins scouts together and had become close friends. Vic was a man who anyone would want for their doctor-kind, compassionate, professional, humble. Honestly, I nearly cried when I saw who was her doctor for this visit. We discussed what was going on with her and he got the IV started. Being in end stage pancreatic cancer with tumors spread to her liver, lungs, colon, and possibly other locations (we later found out that it had spread throughout her body and there was really nothing that was not covered in tumors) her labs were not good, her condition was not stable, and she was clearly very ill. We got a few liters into her and she perked up as much as she was able to at this stage of her life, and then discussed what to do. The medically appropriate thing to do would have been to admit her. Her oncologist had been called (another angel who did not care that it was Christmas Eve, she was a doctor and taking a call about a dying woman at 1am was something she expected) and she left the decision about if my mom would spend the day in the hospital or at home up to me and my friend, the ER doc.

    It was her last holiday. We knew that. It was her last opportunity to say goodbye to several folks that were coming for the first time in months or even years. it would be a stressful time for her though, to deal with all of those people. Maybe being in the hospital, where people act differently, more respectful of the ill, would be better... But, she wanted to be at home. She wanted to be in her own clothes, sitting on her own chair, surrounded by her own things. She wanted to see the babies and young ones who would have not been able to visit. She wanted home.

    It was a very difficuilt decision, but Vic and I discussed it, as a former medic and having had taken some respiratory therapy classes, I had a little training and some knowledge of how to help my mother, and what to watch for. I took her home. She got to eat a little, enough for a taste of her favorites. She got to look at the decorations in her own home. She got to watch some of the old favorite movies-the ones that we all know so well that if you fall asleep in the middle of them you canwake up at the end and still know what is going on. On Christmas, she was able to have Christmas, one for all of us to remember and treasure. I thank an ER doctor that put the emotional needs of his dying patient, and her family ahead of the fact that there was nothing any of us coudl do for her physically.

    My mother went into a coma a few weeks later and died on February 2. The wonderful doctors, nurses, technicians, secretaries, and other staff that helped us all through this will always be in my heart, I am eternally grateful to them.
  2. Alice Chen

    Permalink
    Nancy's daughter, thank you so much for sharing your story with us. Sounds like you have a wonderful family and were an amazing daughter to your mom. I bet she is smiling at you right now. Would you be interested in having us share your story as a full blog post?
  3. James Mansfield

    Permalink
    Hi Dr Chen: thanks for giving US hope that after more than 50 years of attempting to cover all people, we finally have a system that looks promising...hopefully, not too many people will need care while on a trip to a neighboring state that has not adopted the measures as fully.

    Beyond that, I have talked to Medicare beneficiaries over the years and they seem mostly content with the coverage. We could do much better for the people had we simply went to a system similar to Medicare in which the deductible/coinsurance were variable according to the premium (ie: high deductible/coinsurance would result in a low premium.

    Medicare would replace Medicaid.

    The implications of the above are that patients unable to pay could get help from their state/employer and thus pay $0 or near $0 out-of-pocket, eliminating the need for Medicaid. States would immediately benefit since their Medicaid burden would be eliminated.

    I urge you to review the link below (1 page detailed description of the plan to reduce healthcare expenditures, which could practically lead to the reduction of all other taxing authorities in the USA, which allows we the people to keep an ever-increasing share of our hard-earned money.)

    As you'll see, the people controlling this will cause greater and greater inflation, which is a violation of the ERISA law.

    https://docs.google.com/file/d/0B-n5fRikE7Xnb2hFLTZCdTdEcHM/edit?usp=sharing

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