(this post is pretty long, but kind of a glimpse into/treatment for my own suffering. pardon the catharsis.)
the past few weeks have been a blur. two weekends ago, as i blogged about, henry and i took a trip to new york to find an apartment. this past weekend, we headed in a totally opposite (and even farther away) direction - san diego - as i was presenting a poster at the ACP annual conference. fun? more than i can even describe. tiring? immensely.
interspersed between those two weeks, i was on palliative care. talk about a physically, emotionally, and spiritually exhausting experience! my first introduction to palliative care was about a year ago, and it affected me greatly. i wanted to do the rotation this year in order to get better at talking with families/patients and treating symptoms. i absolutely got more than i bargained for - both in invaluable teaching and relentless heart-break.
i rotated on the palliative care "consult team" - which means i responded to requests for assessment from primary patient care teams (like the ICU, oncology, renal) - seeing patients who could potentially benefit from symptomatic treatment, goals of care discussions, or end-of-life arrangements. most of our patients had advanced disease (i.e. a terminal diagnosis).
enter: me. day one. i went to see my first consult, an elderly lady with the worst luck. not only had she suffered from tuberculosis three times in the past, she also had severe emphysema. we were consulted to see her because on top of both of those problems, she had recently been diagnosed with new metastases to her lungs from bladder cancer. she was admitted to the hospital this time gasping for breath with her anxious husband by her side. "how is she doing?" i asked, watching the patient intently, then shifting my gaze to her husband."she's hanging in there," he said. "i just want them to stop hurting her. they keep trying to stick the artery in her wrist to check her 'oxygen numbers.' her wrists are so small and they just dig and dig for that artery. she's crying, can't they see?" this is a fairly common experience in the hospital; a patient has a known, terminal diagnosis, does not wish to undergo extensive treatments, and yet we continue to order painful tests so we can 'check numbers' which ultimately do not change the care we provide for them. they mostly just contribute anxiety and discomfort to the last hours/days/weeks of someone's life. by this point, the husband himself was crying, and i was locating the tissues (something i am now quite astute at). he talked. i listened. we ended up transferring this lady to our palliative care unit where we were able to help get her symptoms under control well enough to go home to her 4month old chihuahua.
this was only my first experience, and honestly, it was one of the more joyous being able to meet physical needs for the patient. i was much less lucky in the following days.
i saw an older lady, diagnosed recently with ALS (a terrible disease where you lose the ability to move, but not your mind/consciousness) who had a rapid decline and was on the ventilator for breathing support. she could only nod yes/no and use her pointer finger to draw letters. her husband was reluctant to talk with her about her condition, as he didn't want to make her more upset. speaking with her one morning, she drew "why did you let them do this to me?" and "take the ventilator off." her husband was devastated. i was too.
i saw a young woman with metastatic pancreatic cancer. it was diagnosed during her pregnancy with her youngest child, all of 6mos old now. she had a total of four young children and was raising them alone. we talked everyday between her episodes of extreme abdominal pain -- and she was terrified. horrified with what was happening to her and paralyzed with fear for what would become of her children. we cried together a lot.
this was the pattern of my days - check the morning list for my patients from the day before to see if anyone had passed, go see my remaining patients, take new consults, choke up, and move on to the next. not much processing time -- and i think this was what allowed me to hold myself together.
even so, there was one particular day that i completely broke down. it was at the end of a very long day; i started seeing mr. g at about 5:30p. he was an older gentleman, not unlike my late grand-pop in appearance and mannerisms. he was a vietnam veteran and sat on his bed fully dressed with his wife by his side. they spoke with thick long island accents and were warm, loving people who clearly supported each other. mr. g had a very aggressive form of cancer that had spread to his bowels and kidneys. he came to the hospital that day because of constipation and urinary symptoms - and it was found that he had a bowel obstruction and his kidneys were failing. without intervention (which he didn't want and wasn't recommended anyways), he had probably a week at most. he was very insightful and talked a lot about his sons who were very successful. he questioned whether he could have done more in life and his wife assured him he had lived well. he sat there in his ski cap, so pale, so straight-faced, and broke my heart. then, from out of no where: "GOD, it's not fair!" --sobbing-- "i just want a little more time with my wife. a few more years to do nice things with her and take care of her." i totally lost it. i sobbed with them. i hugged his wife. when i left the room, i gave him a long, firm, squeezing handshake, the kind you give someone after holding hands in prayer. i was utterly heart-broken for the suffering - for what couldn't be done, what medicine couldn't do, how we had ultimately failed them. i sat at the computer, typing my patient note, weeping shamelessly.
the hardest part of the entire rotation was having an experience like that one and then waking up the next morning and doing it again… meeting another suffering person whose time was short. there were minor joys along the way - being able to help with pain control or help a patient's anxiety - but more soften there was suffering, anger, and my own personal reality of the great limits of modern medicine.
my first week of medical school (four years ago), someone gave a lecture and said - "it's our job as physicians to cheat death - we try to prevent it, lengthen our time before arriving at it, using machines to bring people back from it. but ultimately, we all fail, for everyone will die." it wasn't until recently that i think i understood this. as a direct result, i have tried to change my focus in patient care from "cheating death" to "taking care of people." for if cheating death were really my job, palliative care would not exist. no, my job is to take care of my patients at whatever stage of health or illness and meet their needs (symptomatically)... sometimes giving up hope in modern medicine's ability to cure, but NEVER giving up on my patients.
when you try your best, but don't succeed
when you get what you want, but not what you need
when you feel so tired, but you can't sleep
stuck in reverse
and the tears come streaming down your face
when you lose something you can't replace
when you love someone but it goes to waste
could it be worse?
lights will guide you home
and ignite your bones
and i will try to fix you.