Drowning In The Air: When Hospice Would Have Helped
This week was completely devoted to an Internal Medicine review course. My whole schedule was blocked, and I rode the train into town each morning to sit in a lecture room, sip tea, and soak up the knowledge.
It’s been wonderful to sit and be a student again. But, towards the end of this morning’s lectures, I started spacing out. Speakers were speaking and I kept losing track of what they were saying. I think my brain is full. All the rest of the day, my mind wandered. I wasn’t worrying about work or home; rather, I was remembering a handful of past cases.
The talk that spurred the memories was about hospice and palliative care. I’m a fan of both, but I feel like it’s much harder to get patients to either than it should be. Very unfortunately, I’ve seen and been a part of some not very good hospital deaths….
Well over twenty years ago*, I was volunteering in a hospital emergency room. I was an eager pre-med. The ambulance brought in this guy. He was old but not that old, barrel-chested, sitting up and leaning forward, hands clamped on the edges of the gurney, gasping. He was repeating, over and over: “Oh God. Oh God. I’m not ready. I’m not ready. Help me. Help me. Oh God. Oh God.” His face was blueish. He had oxygen on, but it wasn’t making a difference. The emergency attending flipped his chart shut and said, “This guy’s a no-code. Let’s get the family in to say goodbye and get him some morphine already.”
In those years, I lived for doctor TV shows and soaps, and in all of them, everything happens in the emergency room. Patients and families hang out in those Hollywood-spacious rooms forever. Diagnoses and prognoses are made, babies are born, affairs are had, drama happens, and people die with much fanfare. Of course we know that’s all a load of bull. Right?
Well, this guy went out like a TV show. He was some Italian patriarch, dying of emphysema. I can’t help but think that someone in The Family had it in for him, because this was a slow, torturous spectacle. No less than about twenty people paraded through that room to say goodbye, and him all the while gasping: “Oh God. Oh God. I’m not ready. I’m not ready. Help me. Help me.” But the calling hour went on and on, solemn-faced folks shuffling through, and no one seemed upset that he was drowning in the air.
At some point the ER doc got close enough, and the guy’s hand shot out. He grabbed the ER doc by the collar and hoarsely commanded, “Get me the goddamned respirator.” Some flurry of confusion ensued, with family and ER staff all in a tizzy. But the guy said, clear as day, “I changed my mind. Get me the goddamned machine.”
So anesthesia was STAT paged and the ICU staff descended upon the Italian patriarch, who was intubated and sedated, never to awaken again.
The whole scene came back to me during this hospice/palliative care talk, when the speaker asked us, “If you were diagnosed with a terminal illness with a limited life span, would you want to be referred to palliative care and hospice right away?” The whole room of about two hundred practicing physicians nodded affirmative. Hell, yeah. Give me enough morphine, and let me stay home.
The speaker strongly recommended that we all read Atul Gawande’s book, Being Mortal. I cannot wait to read this, but I’m holding off until after I pass the boards. It will be a treat. I keep hearing about it and reading excerpts and I think it’s going to be an excellent read.
Has anyone read this? And, if you were diagnosed with a terminal illness with a limited life span, would you want to be referred to palliative care and hospice right away?
A book to read: http://atulgawande.com/book/being-mortal/
*These old cases are true. These are from literally two decades ago. Any identifying information has been long forgotten, as well as some details; my imagination has filled some of this in. I trained in five different states and innumerable hospitals, and I’m not particularly worried that anyone will recognize themselves or their family members.
What a difficult experience as a pre-med.
What, if anything, would you want to have seen done differently?
Per your question: I would ask for a referral to palliative care as soon as I got my diagnosis–ensuring the supportive services be part of the treatment plan, easing onto hospice as needed. Personal story: Second year of residency. Summer. My grandmother had been “circling the drain” as we so crudely put it in those days, in and out of hospital with a-fib –> CHF –> pneumonia. She kept bouncing back to the hospital with difficulty breathing, then getting sent home without oxygen. When she was put on hospice, someone made sure she had oxygen at home since it made her feel better. Daily visits, daily weights, personal care–three rock stable years without a single hospitalization later they kicked her out of hospice, and within 6 months she was dead. I believe palliative and hospice care save lives–prolonging quality life.
Thanks for sharing your grandmother’s story, Kohar. The data agrees with you, palliative care and hospice do prolong life and QOL. “Quality life”. Yesterday’s speaker also presented data that showed people “discharged alive” from hospice do poorly in all areas, esp QOL and healthcare utilization… She thinks no one should be “kicked out” of hospice. What would I change about this case? The suffering. He only wanted to be intubated to stop his horrible air hunger. He didn’t need to suffer like that, before or in the emergency room. No one does… But, as the data shows, only about a third of people who would qualify are actually referred to palliative care and hospice.
it’s so sad. the medical field needs to get comfortable with the idea that palliative and hospice care are doing something very important to promote health, so when a patient says “do everything!” we can say “this is a great way for you to feel better and live longer!”
I totally agree! After 10 years practicing IM primary care I have seen way too many people have terrible end of life experiences. I feel really strongly about the benefits of palliative care and hospice, but find so many patients resistant to the idea, even when I explain all the advantages in the context of a good therapeutic relationship with the patient/family. So many say they don’t want to ‘give up’ while in the same breath expressing priorities that align well with palliative care. How can we as PCP’s help our patients understand the goals of palliative care and convince them that these goals actually are very similar to what they (the patients) want. The stigma of hospice seems so great in our culture that it blinds people to all the benefits…
Definitely read Being Mortal. I cannot say enough good things about this book. It is fantastic. There is also a Frontline program with Atul Gawande that aired in Feb 2015 on the same subject using some of the same material from the book.
Thanks so much for your input- I will check out the Frontline episode; sometimes it’s easier to give patients a TV reference than a book…
Hospice doc checking in, so you know what I’ll say. Yes, I read Gawande’s book, and enjoyed it much more than I expected to. You’re in for a treat. And yes, I’d want to be referred immediately. That poor man – if they’d just given him a tiny bit of morphine and a tiny bit of Ativan…
that said, it’s been my experience that many physicians do not follow through on what they say they would do, either for themselves or their loved ones. My father suffered sudden cardiac death on the driveway. The EMTs arrived and by the time they got Dad to the ED, he was in PEA. They never got a pulse or a pressure. I finally reached the doc in the ED 45 minutes after EMS showed up at the house (and he was probably down for 10 minutes before that) and the doc ARGUED with me about stopping resuscitation efforts. ARGUED WITH ME. Because “He’s a doctor, so we should do more”. My mother had been telling them to stop the entire time – they ignored him and called Dad’s partner, and they were waiting for him to arrive. I finally yelled loud enough and long enough to get them to listen to me.
Oh my goodness, what a terrible experience, and I am so sorry. Sounds like the ER doc let his own emotions get in the way in that situation.
It’s a wonderful book and I think it should be required reading for medical school. And for everybody who works in the nursing home. And for children with aging parents. I’ve read a lot of his other stuff. This particular book was recommended to me by my mother, who is in her 80s and has a very bad heart…she wants a good and most graceful exit. I and all the family want that for her too, the challenge is to make sure she has it. We’re not at the point of hospice yet, although it’s hard to know sometimes just where that is. As for myself, I would count a sudden cardiac death on the driveway as a blessing and hope the EMTs arrived too late.
That’s awesome that your mother recommended this book! Hopefully you’re able to achieve that for her.
What a horrible story. If only he could’ve gotten some comfort in those last minutes rather than suffering like that. I need to read that book, I’m putting it on my library holds right now.
Personally, intubation and sedation with a terminal extubation seems far preferable to me. I also think it’s an awful lot to ask for people to stick to their DNR wishes when they are literally drowning. I can’t imagine that anyone thinks that’s how it’s going to go when they say they want to be a DNR. It’s the furthest thing from humane.