How could you give up and do NOTHING?
Extremely ill patient admitted to hospital. Choice of very risky surgery with predicted poor outcome or starting hospice and making him comfortable. Common situation with our patients living longer yet more debilitated. Difficult decision, especially at the last minute.
One of my most memorable patients was Pete*. 85 year old Pete had come from a nursing home with significant abdominal pain and vomiting. After a quick trip through the ED, he got himself a CT of the belly, a NG tube, some IV fluids and some pain and nausea meds. Admitted to the 4th floor, he quickly started going downhill. The ICU nurses at the hospital where I worked served as resources for floor nurses if they thought a patient looked like they were declining…a measure put in place in hopes to avoid a code. His floor nurse had called ICU asking for help, so I headed on up to see Pete. Running into his surgeon in the hallway, we spoke briefly before going in to see Pete. It wasn’t good…at all.
Now Pete was a tiny thing, probably 90 pounds soaking wet. It was obvious his appetite had waned significantly the last few months as he literally was skin and bones…except for the biggest brown eyes you could imagine. Eyes that mirrored his fatigue, anxiety and pain. So much was out of his control and he appeared a helpless victim in the war of disease. He was on a 100% nonrebreather mask when I first met him. His respirations were labored as he struggled to catch his breath. Yet, he clung to every word the surgeon told him…words such as small bowel obstruction, sepsis, cancer everywhere, poor surgical candidate, probably won’t make it off the table. Powerful words. His sister beside him openly wept while receiving the news. Afterwards, the surgeon headed out and told the patient and his sister to let me know what they decided, for they needed to decide soon before it was decided for Pete (via a code).
I sat next to Pete and held his hand. I told him that I would support him in whatever he chose. If he wanted to fight, we would take him to surgery and afterwards to ICU if he made it. That we would do everything we could to save him and would try to minimize his distress. Yet, I made sure I explained to him and his sister what “do everything" entails. It’s not pretty…and it’s not easy. It’s certainly not like on TV! He needed to know that it would be an uphill battle, probably for weeks. I covered being on the vent and having multiple lines and tubes. He most likely would have to be restrained at times. The “do everything” was option #1. I also told him about option #2: comfort care.
His doctor and I were recommending comfort care because we felt that Pete’s body was dying. With the poor odds of him surviving surgery and recovery, we felt like it was more humane to just make him comfortable. Yes, the doctor and I knew it would result in his death, but we also felt that aggressive measures would still result in his death, yet with the addition of much suffering. But, ultimately the choice was up to him and his sister. You see Pete had never married…nor his sister…they had been best friends their whole lives. Pete didn’t take long to decide…he revealed that he was so tired of hurting and struggling to live. He said, “I just don’t have any more fight in me. I know I’m dying. I’m fine with it. ” I updated the surgeon and called his hospitalist.
A DNR (do not resuscitate) was signed and hospice consulted. A morphine drip was started with prn Ativan orders for any restlessness. The morphine did wonders. It truly is the drug of choice for air hunger. We were able to change his oxygen mask to nasal cannula for comfort. His respirations settled down, he was able to relax and go to sleep. As the evening passed, Pete’s coloring changed: his hands and feet became mottled, reflecting his lowered blood pressure as the sepsis progressed. He started having periods of apnea…5 seconds…then 10 second stretches…yet he slept peacefully on. His sister sat beside him, having said her goodbyes as the morphine was started. By midnight, Pete slipped away, peacefully and in the presence of the one who loved him the most: his sister.
Many folks would ask, “How could you give up and do NOTHING?” Yet, there was much we did do: we gave a kind and gentle man rest, a peaceful passing in the presence of someone who loved him dearly. We gave his sister support during his transition and the chance for hospice to follow HER for 14 months after his death. Hospice is not only for the patient, but very importantly for the family, especially that first year after their death. Believe me, it IS something!
*Name changed to protect patientLast edit by tnbutterfly on Jan 16, '17
I was an ICU nurse for years before trying hospice. Loved ICU but love what I do now even more! Fabulous to be able to equip my patients to live out their lives on their terms, their way. I'm a Clemson graduate (Go Tigers!) and live in the upstate of SC. Blessed with a wonderful hubby and 3 incredible kids. #blessed
Joined Jan '17; Posts: 2; Likes: 45.Jan 16, '17I certainly wouldn't ask 'How could you give up and do nothing?'. In this patient's complex situation, comfort care, palliative care, whatever you want to call it, was the best option, and the patient chose that option as well, most importantly. And being there, at that time, with the patient and his sister, was definitely not doing 'nothing'. You did what he and the situation called for.Jan 16, '17Sometimes doing "nothing", is actually everything. (It reminded me of this article I wrote about withdrawing care several years ago: Thank You for Nothing)
This story brought tears to my eyes. It is patient-centered nursing care at it’s finest.Jan 16, '17Love this. We always do something. We always try to do what's best for the patient and maintain their dignity and choice. Thank you for sharing.Jan 16, '17Beautiful. To know that this patient was at peace and comfortable (free of pain) before he passed is true closure. This is a really good reminder that being open, honest and present with our patients is sometimes the most important interventions we can provide- especially when death is imminent and further care would only cause more pain and suffering.Jan 17, '17This is a lovely article- reminds me of a home hospice pt I took care of when I was new to home hospice- that pt died within a couple weeks and about 5-6 months later, his wife became a home hospice pt. When I came to the house, both daughters said "We're so sad to see you, but so glad it's you".Jan 17, '17When I was working ICU I wish we had done more "nothing" for many of the patients. Prolonging the pain and suffering by doing something is not the answer. My family is clear on my wishes, and am medical power of attorney for most of my family also.Jan 18, '17Excellent article! Having a history in dialysis, where most patients have so many comorbidities and complications, I think that the medical community does not truly educate about the outcomes of the time it takes to do dialysis or the prolonging the inevitable. Nursing is my second career and having clinicals in a large ER and seeing CPR done on a lady that was dying anyway, amputations on both legs, ascites, etc. made me realize that it is so extreme to use measures on patients like that. Education is priceless and unfortunately sometimes you have to be graphic to really make sure they understand things.Jan 18, '17I wouldn't call that giving up and doing nothing. You all did something, something wonderful. You made a man comfortable probably for the first time in a long time. You gave him an easy transition - how many have we collectively seen who didn't get that basic kindness? You gave his sister a gift as well - she didn't watch him struggle for air, restless and suffering. I definitely wouldn't call that doing nothing.
My father-in-law (God rest his soul) was a pretty smart man. When I was in my early twenties mourning my very first close loss, my grandma, grief rode me hard. He sent me a letter and told me: "Death is a part of life, and we all do it".
I have no illusions that one day death will come for me too someday, I just hope when it is my time to go that my own transition will be as comfortable and calm as Pete's was.
You did good nurse.Jan 18, '17I remember a patient in a similar circumstance where I was forced to attend one of those resource coordination meetings. I gave them the synopsis and said that the patient was dying and I'd be lucky to make it out the door at the end of shift without him expiring first.
"What have you planned for his skin care?", I was asked. I looked at the coordinator as if she'd lost her mind, which I believe she had. "Nothing", I said, "he's dying. If I roll him over, he'll probably expire on me right then." Everybody knows you don't so much as turn a patient like that. You might as well put a gun to his head as give him a bath. All you can do is keep him medicated and keep the family calm. Past a certain point, the care passes from the patient to the family.
I'm sure that coordinator thought I was the poster child of slackness. I thought she was so long away from the bedside she'd forgotten what she might have once known. Either that or she was a moron. A nice person but not grounded in reality.Jan 18, '17I'm shocked that the surgeon didn't want to go the aggressive route just to make some $$$$. Since physicians are getting their reimbursements slashed, they're all looking to do more procedures (whether invasive or non-invasive) because that's where the money is. The surgeon should be commended for not recommending surgery, although if his patient died within 24 hours of getting off the O.R. table, it is a reportable event to the state. Maybe he didn't want to deal with that. The way it sounds, Pete wouldn't have lived long enough to make it into the O.R. anyway.
I say this because I have seen physicians do COMPLETELY UNNECESSARY procedures for NO REASON other than to MAKE MONEY. One of the best was an interventional cardiologist doing a TEE on a 90 year old woman in the PACU after a vascular procedure. WHY? Physicians tell their patients it is for "diagnostic purposes", and most fall for it. What they need to ask is "How would the treatment be any different than what it being done now?" Most time, there is no difference, so there is no point in doing the procedure.
have my own experiences with this as well---2 days before Christmas I was diagnosed with an occlusive DVT of my leg. Went to ER, had sono of leg, told them not to admit me because I had too many presents to wrap & baking to do, I was discharged on Xarelto with the understanding that I had to see my primary the following week. I went to my primary the next week---6 days after I was in the ER. Primary flips out, says I must go to see a vascular surgeon at 9am the next day (it was 4:30 in the afternoon & I was supposed to be working the next day----thanks a lot) because I might need a thrombectomy (if he thought it was such an emergency & that I needed a thrombectomy, he should have sent me to the ER right then & there)and he calls the vascular surgeon's office & makes an appointment for 9am the next day. I tell him I can't go until after 4pm because I am working, and he tells me I have to cancel working the next day because it is urgent that I see the vascular surgeon at 9am. I call work & tell them I can't come in the next day----they were thrilled with that one.) So, I go to the vascular surgeon. He does a sono in the office. Determines that I don't need a thrombectomy and says that Xarelto is the treatment of choice and my body will absorb the clot in time. Then he tells me that I should have an intravascular ultrasound to see if I have any clots in my inguinal veins (even though I have no swelling in my thigh & he said he doesn't think I have any clots in my inguinal veins) because 40% of patients that present with lower extremity DVT's have inguinal clots. I ask him what the treatment would be if he did find clot(s) in my inguinal veins. He says "The same thing you're on---Xarelto". Then he tells me that I should have a CT of my pelvis & abdomen to see if there are any masses that could be malignant, even though there is no suspicion or reason to think that I have any tumor or masses in my abdomen/pelvis. (I am not having that done because I do not want to be exposed to that much radiation for absolutely no reason whatsoever.) Then, he calls my primary doctor and comes out to tell me that I have to go to my primary's office after I leave his office because I have to get a referral for an echocardiogram. (I was not diagnosed with a PE, nor was I having any shortness of breath, chest pain, palpitations, lightheadedness or any other cardiac symptoms, so I had no idea why I needed this echocardiogram so urgently) So, I figure I am going to the primary's office to pick up a prescription/referral for an echo. NOOOOOOOO-----primary has a company that comes to his office to do the echocardiograms once a month (and I am quite sure he receives a kickback/commission for the number of patients he books for echos) and it just so happened that the company was going to be there the next day and they wanted me to make an appointment for THE NEXT DAY to have an echo. Because I missed one day of work to see the vascular surgeon at 9am for absolutely no good reason, I told them I was not calling out from work again, and I had to have an appointment after 4pm. They say "Oh, the company only does them up to 4pm" and I told them I could not come in before then. So, they book me for 4pm anyway. I get a call the next morning from the primary's office telling me that the company that does the echocardiograms doesn't accept my insurance. And that was the end of that. The "emergency" echocardiogram that I needed all of a sudden wasn't so emergent anymore. The primary doctor didn't get on the phone & say that I had to come pick up a prescription to have an echo done at another place. The primary doctor didn't even tell me that I had to see a cardiologist---he just wanted to do the echo before the end of the year to maximize his profit for 2016. The thing is, everything happened so fast between the visit at the primary's office & the vascular surgeon's office the day after that I didn't have a chance to step back & think about all of this stuff. Three years ago I had a submassive saddle PE and a DVT in the exact same place as the DVT I had this time. I was admitted to ICU because I was in heart failure, put on IV heparin, stayed in the hospital for a few days & discharged home on Xarelto. In 3 months after being discharged from the hospital, I was running 5 miles a day, and the pulmonologist & cardiologist agreed that a follow up echo was unnecessary considering my activity level. Now, I have a DVT in the same place, no pulmonary symptoms, and all of a sudden the world is going to spin off its axis. My primary also told me to go see a hematologist immediately---when I was hospitalized 3 years ago, I was tested for every hypercoagulability disease in the books---everything came back negative. I don't have those records, but I signed a release authorization at my primary's office to get them. Why would I see a hematologist "right away" if I didn't have those records to see what I was tested for in the first place???? It would be a useless visit. Doctors today seem to forget that every office visit comes with a co-pay, every test that has to be read/interpreted comes with another co-pay, most people have to take off work to go to an appointment, etc.
At any rate, that was WAAAAYYYYY too long, LOL! But, it is just an example of how people are being fleeced by our current healthcare system. I am a "less is more" type of person---I don't want to sit in every doctor's office on my days off for nothing. I put off going to the ER when I had the PE for over 2 days, even though I couldn't breathe (not smart, I know---but a PE never even crossed my radar screen) and I delayed going to the ER with the DVT this time until I woke up with a swollen & hard leg with distended superficial veins popping out of my skin because I HATE GOING TO THE DOCTOR. It seems that even if you go to the doctor for a check-up, they find something wrong with you, because that's how they make their money. "Diagnostic" tests that are unnecessary make them lots of money.Jan 18, '17That was beautiful and i've experienced exactly what you describe with Pete...i work in Cardiology and we get patients who are overall declining...they are 90 after all! Yet they want the CABG, the TAVR, the balloon pump...at all costs and we all know full well they may survive the surgery but probably not the recovery!
While we have such wonderful technology...is it always the most humane choice to put someone who has a clinically slim chance of survival through it? Its not my choice obviously but i feel like patients often dont fully comprehend how ill they are, how much work majory surgery entails and how many risks there are! They think it'll be a piece of cake!
I often reflect on this 1 patient...young adult who needed a transplant and was in practically peak physical and mental and emotional condition for the situation they were in and this patient didnt survive the recovery...and they were in better shape than most who go into the same surgery...so what about those going in with less than ideal condition.
Eventually...with the high cost of medical care vs. Outcomes...society is going to have to change its thinking.
Eh, we'll see... ✌Jan 18, '17Saw this scenario too much, I am so thankful they leveled with the guy and let him make the decision. Give that surgeon a hug. I do think that they were on target by telling him all of his options though. I do not think it ever appropriate to not give people the information they need for the informed consent, that is a given. I worked a lot of palliative care and hospice off and on over 43 years. I never had any difficulty accepting what a patient and/or their family wanted as long as they were told the truth and given all options. I also got my backup when some aggressive surgeons wanted to to do radical neck surgery on a patient (85 years old)with lung CA with diffuse mets. He would have never made it through any surgery. All of us RNs got our backs up and threatened an ethics referral and suddenly the surgeons backed off and said they could not do it. We all thought that the surgeon had never done that particular surgery and needed to "get his ticket punched". I think we showed them the strength and compassion of the nursing staff. The man died about a week later. I think this case was handled to the very best it could be. Sometimes the best treatment is to back off and support. My children know that is what I want.
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