If you were the one who had metastatic cancer, what would you want your doctors to do?
July 26, 2010 9:53 AM   Subscribe

What should medicine do when it can't save your life? Atul Gawande looks at the system of final-stage treatment for terminal patients, which, despite more than 40 years of a hospice movement for better end of life care, often ensures that patients die exactly how they least want to: in a hospital, hooked up to machines. Gawande tries to envision how, "when the chemotherapy stops working, when we start needing oxygen at home, when we face high-risk surgery, when the liver failure keeps progressing, when we become unable to dress ourselves" medical care can focus on quality of life, rather than prolonging it.

Gawande discusses how, in many cases, advance directives are not enough: family members need to know not only what medical care a patient does or does not want, but they also need to have the difficult conversations about the minimum quality of life a person would like to have in his or her final days. (Gawande quotes one patient: "Well, if I’m able to eat chocolate ice cream and watch football on TV, then I’m willing to stay alive. I’m willing to go through a lot of pain if I have a shot at that.")

Read more about palliative care reform at the Palliative Care Policy Center, the history of hospice care from the Hospice History Programme, and about the founder of the hospice movement, Dame Cicely Saunders.
posted by ocherdraco (36 comments total) 49 users marked this as a favorite
As someone who had a parent go through hospice, I recommend everyone get a bit more informed on how palliative care works. When someone only has days/weeks to live you want to make sure they have everything they need to be comfortable in their own home. Luckily there was an amazing delivery service in my hometown that handled any needs within an hour! Without that we would have been going crazy.
posted by squashotheclown at 10:17 AM on July 26, 2010 [4 favorites]

My mother works at a hospice. They only take patients in the end stages of terminal cancer, and they can only accomodate seven at a time, but they do their best to provide quality of life medicine and it really is a serene, beautiful place to spend your last few days/weeks/months. They don't only provide for the patients, but for the families as well, with the care and atmosphere and services available. People come back year after year at their memorial service for those who have passed, and many families end up volunteering at the hospice after their loved ones die.

They're often in a pinch for money, however, relying on (unreliable) grants and lots of volunteer work. There should be more places like where my mom works. They do a lot of good for the people in their care, making sure they are as comfortable and pain free as possible before they die. But its a struggle.

tldr - I support the palliatvie care movement.
posted by sandraregina at 10:22 AM on July 26, 2010 [8 favorites]

I've got a number of relatives in the health care field, and my grandfather died of cancer a couple of years ago. Palliative care is definitely the way to go. No dashed hopes, no heroic but deeply unpleasant efforts at resuscitation, no feeding tubes, just attentive aides, as much water as you care to drink, and a morphine drip.

If I had to pick how I went, and couldn't pick sudden, catastrophic trauma, that'd be it.
posted by valkyryn at 10:28 AM on July 26, 2010 [9 favorites]

This is very timely as we lost my mother-in-law today. She was diagnosed with an inoperable brain tumor about three months ago. Her doctors never pushed for any extreme measures to prolong life. They told my in-laws that she should simply spend as much time with family and friends as possible and engage hospice care when the time came. She died this morning, at home. They had a hospice worker come to the home whenever they were needed, to monitor her progress and advise the family on what to expect and what steps they could take to assure her comfort. It definitely was the way to go, though I'm not sure whether Medicare or Medicaid covered the costs of the hospice visits.
posted by Thorzdad at 10:42 AM on July 26, 2010 [6 favorites]

Sorry for your loss, Thorzdad.

My aunt is a hospice nurse and while I rarely talk to her about it, she always has positive things to say about it. Thanks for the post, ocherdraco, I look forward to reading through it all.
posted by snapped at 10:46 AM on July 26, 2010 [1 favorite]

See my previous comment about better-than-standard advance directives:
posted by lalochezia at 10:51 AM on July 26, 2010 [1 favorite]

which, despite more than 40 years of a hospice movement for better end of life care, often ensures that patients die exactly how they least want to: in a hospital, hooked up to machines.
I am a neurology resident, and I've seen a good share of terminal patients, as a medicine intern and as neurology resident. What I see in patients who end up not dying comfortably at home is, first and foremost, patients who are no longer able to speak for themselves and family members who either never fully bought into palliative care only, or who feel elementally uncomfortable with the idea of not doing everything they could. They seem to feel as if others would judge them terribly if they said, "No, Mom's had enough, we don't want any more hospitals."

I think it's probably a lot of guilt about a parent or sibling who's fallen into their care, often without the new decision-maker having ever considered this would happen. Plus, a persistent idea that any medical avenue available should be taken. It's almost--despite what people continue to say about the hypothetical circumstances of their own terminal illness--as if a hospital death is ingrained.

Sometimes the patient is himself complicit. And it's usually like, well here's this new problem that we could probably fix, and they come into the hospital, and they don't leave because there are complications. Or an expected progression of their terminal disease erupts, and even the most-prepared people are never really prepared for imminent death, and so in desperation they ask for treatment.

And then in a hospital, sometimes it actually takes a strong physician to be very insistent to make everything come together for a discharge to hospice. The easy way lies in the hospital, maybe even in an acute palliative care unit (if you're lucky), esp. for a physician who probably sees twenty to thirty patients in the hospital daily. To work, to push people, to be a ceaseless advocate of the patient's wishes is time-consuming. But I thank God that there are such docs.
posted by adoarns at 10:53 AM on July 26, 2010 [13 favorites]

I read through the article - another well written piece by Atul Gawande, of course - and I was pleased to see that he did not bury the lede, which in my opinion was this:

What do we want Sara and her doctors to do now?

The "we" should be, of course, our society, and Sara, should be a proxy for the vast majority of patients who have reached the end stages of terminal illnesses, but hopefully the point is clear: "we" often are willing to prolong death, at remarkable expense, in a desperate and often losing gamble to try to save a life.

Our (that is, us medical types) hope is that patients and their families who are diagnosed with these devastating diseases will have end-of-life discussions before the any decisions need to be implemented, because it is hard enough to make decisions about where to draw limits, let alone to do so when your loved one is gasping for air. But in general, our society doesn't like to think about death, and in many cases, it's easier to say that you're willing to "do everything" to avoid it. The problem is that "do everything" has high costs - to patients, to families, and to society - and we simply cannot continue to pay for "everything" for everyone, especially when the end result is the same 99% of the time. Our society simply cannot afford to make $100,000 or $500,000 or $1M gambles on an individual life being prolonged by a few more weeks or months, or just because there have been "a few cases" of people surviving this or that horrendioma.

I am a huge believer in hospice. As an oncologist, my feeling is that if you've got a patient who has progressed past your first or second line therapy, or if you've got a patient with metastatic disease, then you should be talking to that patient and their family early, frankly, openly, and honestly, about the true prospects for survival, and you should begin to integrate a palliative care specialist into the treatment team. Recognizing reality is not "giving up", and I think that Gawande does a great job of illustrating that hospice doesn't mean that you have to give up all life-prolonging therapy. But there have to be some limits - if not now, then soon, otherwise the costs of spending so much at the end will begin to impact our ability to screen for cancer up front, our ability to develop and implement effective therapies for limited-stage disease, and our ability to make the most impact out of what will surely be a shrinking health care budget.

One of the best things that I learned as a pediatric oncologist is how to have very hard conversations with people right from the get-go. Delfuego can probably confirm this - it takes practice and more practice to learn how to talk to patients and families about horrible situations and difficult decisions. In pediatric oncology, we have the time (because there are, fortunately fewer patients), where in adult oncology the volume of work is such that there isn't the time. But there needs to be -- that type of guidance, and teaching, and explaining, and listening, at the most critical junctures of our illnesses -- isn't that what we want and need from our doctors?
posted by scblackman at 10:56 AM on July 26, 2010 [14 favorites]

Aging With Dignity has a program called 5 Wishes that guides families through discussing end of life issues. These conversations are important to have sooner rather than later, although the details can be worked out when needed.

Good article and discussion. I was particularly impressed by the news that some hospice patients seem to survive longer than those who get more standard treatment; it does not surprise me in the least that complications from aggressive treatment to prolong life may have the opposite effect.
posted by TedW at 11:00 AM on July 26, 2010 [6 favorites]

I dread making these decisions for my mom. She was given the 6 mo time limit 6 mo ago. Now her chemo is reducing marker number and tumors are shrinking. It's not going to buy her remission but just extended time. However, it plays a tug of war with her and my emotions. We were told 6 mo ago start making hospice care and now she's doing "better". And my dad with his lovely "you're not dying here" bullshit abuse, I have to make sure she has decent care away from home without a constant battle with him and an emotional fight with her. It's just a wrong senario all the way around and I'm put in charge to handle it all---hospice, palliative care, being the mediator between them, interpreting things for my mom and make her understand facts from fiction (and she's stubborn with reality so I don't have much hope). On top of which their estate planning/advance directives which STILL isn't resolved because they fight over the stupidest things ("well I don't want your DH to get any of it" yet she doesnt' want me to divorce him).

I hope they have someone on staff to help me get through this circus. I can't be lawyer, therapist, doctor, and protector all in one fell swoop.

But I will say Metafilter has given me lots of resources and support, so I thank you.
posted by stormpooper at 11:17 AM on July 26, 2010 [3 favorites]

Sorry for your loss, Thorzdad.

I'm not sure whether Medicare or Medicaid covered the costs of the hospice visits.

I'm not either, but they damn well should. Hospice care is a hell of a lot cheaper than admitting someone to the hospital, and a lot of the time it's more humane too.
posted by valkyryn at 11:26 AM on July 26, 2010 [2 favorites]

Thank you, ocherdraco, for this post.

stormpooper, in my experience with hospice/palliative care for my dad about 18 months ago, the entire staff helped us get through the "circus" in one way or another. After having my dad in several hospitals/care facilities for months, I was amazed by the difference in the level of concern shown by everyone on staff at the hospice facility. I hope your experience is the same.
posted by ElDiabloConQueso at 11:30 AM on July 26, 2010 [2 favorites]

I lost my best friend early this year. Last December, while undergoing a lung biopsy, she went into cardiac arrest and her lungs collapsed. After resuscitation, she was placed on ventilator in ICU, where she stayed until Christmas. In January she was readmitted when she unable to stand. The hospital only kept her two days: she was sent home with Hospice because circulation was so badly blocked that her feet turned gangrenous and the kidneys shut down. I spent time with her everyday, but she was alert only two days before dying few days later.

While there was not time for Hospice to help her face death (she was so afraid before she lost consciousness), her family was enormously helped by the support and the counseling. Those Hospice nurses are just wonderful, prompt with all kind of suggestions to make life easier for the patient and for the family.

While this has spurred my husband and me to put our affairs in order, I am left with some troublesome questions:
1. Why the resuscitation? The doctors must have known the extent of the cancer before the biopsy, from the X rays.
2. Why put limits on the amount of morphine that could be delivered? She was on a morphine pump, but she would become so restless before the next dose.

Thanks for the post! While I have a Directive, I'm going to make sure that my family knows that they can keep me alive as long as I can read and eat chocolate cake!
posted by francesca too at 11:30 AM on July 26, 2010 [1 favorite]

Everyone reading stormpooper's comment should see the wisdom of making a date with a lawyer to draw up a current will, and have iron clad descriptions of final care. Not having a tidy disposal of self and property is a terrible thing to burden your children.
posted by Cranberry at 11:34 AM on July 26, 2010 [1 favorite]

1. Why the resuscitation? The doctors must have known the extent of the cancer before the biopsy, from the X rays.

Because if they'd failed to do so absent an express directive telling them not to, they'd have been liable for professional malpractice.

2. Why put limits on the amount of morphine that could be delivered? She was on a morphine pump, but she would become so restless before the next dose.

Because morphine causes respiratory depression, though you can see from that link that this is not always a bad thing. Too much morphine will kill you though, and again, absent an express directive telling them to manage pain whatever the consequences--a directive you can give, by the way--doing that could subject the doctor and hospital to professional malpractice liability.

I'm not saying that this is a good thing, just that it's the way it is.
posted by valkyryn at 11:36 AM on July 26, 2010 [1 favorite]

If the language in the original health care bill had been something like this information, I doubt there would ever have been discussions about death panels.
posted by thorny at 11:37 AM on July 26, 2010 [1 favorite]

1. Why the resuscitation? The doctors must have known the extent of the cancer before the biopsy, from the X rays.
2. Why put limits on the amount of morphine that could be delivered? She was on a morphine pump, but she would become so restless before the next dose.

Sorry to hear about your friend. As to your questions, presumably they didn't know exactly what they were dealing with and how treatable it might be or else they wouldn't have needed a biopsy specimen. So they wouldn't have known her prognosis until the report came back. Also, as the article mentions, the default response of medical people is to do something, especially when a sudden emergency comes up.

The amount of morphine was limited primarily out of a reluctance to be labeled as causing euthanasia, as morphine can certainly be fatal. Also, morphine can have some unpleasant side effects (constipation, nausea, itching) and it can be difficult to find a dose that provides good pain control while minimizing side effectss.
posted by TedW at 11:39 AM on July 26, 2010

My dad and I put a lot of work into making it possible to keep working until about a month before she died and for her to die at home. She was adamant that the last thing she wanted was to "be stuck in a hospital, alone, waiting to die."
posted by Karmakaze at 11:39 AM on July 26, 2010

Er, for my mom to keep working...
posted by Karmakaze at 11:41 AM on July 26, 2010

I agree Cranberry. They're assuming since I'm an only child it will be easy peasy.
posted by stormpooper at 11:51 AM on July 26, 2010

I read the first part, but couldn’t finish it-it was a little too close to home. I just received word that my father has reached the ‘shopping for possible experimental treatments’ phase of his cancer. For two and a half years, his status was ‘still has terminal cancer, not dead yet’. He’s still fairly active, making his own decisions, living his life between treatments. There’s never been any hope of remission, but the past two years of treatment were worth it. I don’t know if he’ll ever decide to switch to hospice care, but I’m selfishly hoping that he’ll make the decision while he’s still coherent-so my mother doesn’t have to.

What always strikes me is how little others who haven’t experienced this understand the process. That how he’s feeling isn’t a reliable indication of his life expectancy-the treatment’s more likely to make him feel like crap than the cancer is. The number of people who ask me how long he has to live-as if those numbers mean anything on an individual scale, or as if we can tell when the chemotherapy will stop working, or if another treatment will work. There’s also a slow, slow degeneration in the definition of what it means for something to work, what is considered normal or ok—how many side effects to you get used to, do you put up with? If the patient can only get out of bed one week out of every two, is it still worth it? Two days? Bedridden but still coherent? It’s hard to tell where to draw the line.

But still, I have a good friend who lost her father a few months ago from multiple organ failure. It was month-long drawn out death in the ICU, and they kept on insisting on having the doctors do everything to keep him alive-despite the doctor’s warnings that he was never going to get better. He lost his eyesight, he lost both of his legs to gangrene, he became delirious and then incoherent. I understand why her family chose that-she has a sister that was pronounced dead twenty years ago (still living, though with a nasty scar), but it just sounded so painful for everyone involved. Who was helped by prolonging his life?
posted by dinty_moore at 12:05 PM on July 26, 2010

Oh, man.

My mom died in hospice last September. It was wonderful to have the option to have her there, since I wasn't in a position to provide 24 hour care to her at home and she was single.

One of the difficulties I did find with the system was that the insurance wouldn't pay for hospice if she was "too well" even if she couldn't be home and take care of herself. It also wouldn't pay for a 24-hour nurse at home. This huge gap made me wonder what happens to people who don't have even a single person to help care for them. Perhaps they end up in the hospital or a nursing home?

That said, the hospice experience was as wonderful as I could imagine in the circumstances. The nurses were fantastic and really helped my mom. The social worker was great too (although my mom thought he was a dork. Seriously, she said that).

It is truly difficult to have the difficult conversations. Up to the end, my mom just wanted to live. If there had been something that could help her, she would have tried it (throughout the course of her cancer, she tried 8 or 9 different chemos, including experimental treatments). But there wasn't any treatment available to her. So she died. And, thanks to hospice, her quality of life up until the end was pretty damn good. They took care of her pain relief, and made sure she was comfortable.

But part of what made that happen was that she knew she didn't want to live in a nursing home, or a hospital, and she told me, and she signed an advance health care directive.
posted by miss tea at 12:13 PM on July 26, 2010 [1 favorite]

dinty_moore-- yes, people who haven't been through it don't understand the process at all. They think the patient will have chemo and be in remission. But with many, many cancers they simply keep on with one chemo until it stops helping (even that is sometimes hard to define) or the side effects become too debilitating.

People didn't understand that my mom had terminal cancer for almost 5 years, and for all of those years she was in fact terminal. There was no question it would kill her, the only question was when-- and with so many of the treatments there is literally no way to predict whether the outcome will slow or stop the growth and for how long.
posted by miss tea at 12:17 PM on July 26, 2010

I'd rather skydive without a parachute, though I suppose I'll probably end up using a gun like most people.
posted by Eideteker at 2:33 PM on July 26, 2010

Besides, how do you attend to the thoughts and concerns of the dying when medicine has made it almost impossible to be sure who the dying even are?

That is a remarkable question right there.
posted by The Bellman at 2:57 PM on July 26, 2010 [2 favorites]

I love Atul Gawande so much, and I'm sure I'd really appreciate his insights on this subject, but since my father (who had a very thorough and clear advance directive) got placed in a hospice late last week and could be gone any time between today and the next few weeks, I don't think I can read this right now with the right level of attention. When I get that issue in the mail I'll have to save it in a special place.
posted by matildaben at 4:58 PM on July 26, 2010 [2 favorites]

Hospice care is good, it's really good. But I wasn't prepared for how horrible it was going to be to watch someone die. I had read a lot of obituaries where people supposedly "died peacefully with their family by their side," that was how I thought it was going to go.

The end of the article is more or less a replica of my mother's death, although it went on for nearly two weeks. The hospice nurse on duty cried after my mother died; she said it was because of us, the way we kept vigil but I don't know how she saw bravery, we were all scared shitless.

I'm still glad hospice gave her a choice to die the way she wanted to, regardless.

*good thoughts for those who have had family/friends in hospice or currently in hospice* I'm sorry for your loss, Thorzdad
posted by Wuggie Norple at 5:40 PM on July 26, 2010 [1 favorite]

I don't know how she saw bravery, we were all scared shitless.

Wuggie Norple: But you were there, present with the dying. That takes bravery.
posted by MonkeyToes at 6:24 PM on July 26, 2010 [3 favorites]

I've been learning a great deal about hospice care recently, as I just had a relative pass away two days ago from cancer. The people helped us a great deal, and at the very least we're comforted by the fact that she died at home rather than in hospital. Nevertheless we were still running around like headless chickens - I can't imagine how it would've been without the supplemental care.
posted by Anima Mundi at 6:56 PM on July 26, 2010

As bad as things are, they have gotten better. When my grandmother was dying(Alzheimers) in the early 80's, the doctor didn't believe in stopping care, and refused to be the one to turn off the machines, and bluntly told my mother to do it herself, which she did, and hasn't really ever recovered from.

Last year, when my father went into the hospital for what we all thought would be routine surgery (it failed, badly), the doctors were very, very helpful, explaining that, just maybe, one more surgery might work (after three in a week had already failed), but that by "work" it meant that he might live for another 6-8 weeks, but never leave the ICU, and more than likely never regain consciousness. It was clear that they were against further surgery, but they did leave the decision up to us. They gave us all the information we could stand, to be honest, and let us make the choice. There were nurses on hand to make him as comfortable as possible, and to comfort us as well. It's been a year, and honestly, we were lucky that the hospital didn't fight us, because there was no clear written directive, just a handful of conversations from years ago, and while we feel we did what my father wanted, I'll never honestly be sure. Talk to your loved ones. Write it down.
posted by Ghidorah at 7:17 PM on July 26, 2010

Lots of great comments from people who have gone through this experience with a lvoed one. Keep sharing those stories, especially because they are as important as the more often told stories about the person who miraculously got through everything. Keeping a balance of what is likely to happen versus the rare occurrence is important, and can only be done with open discussions about our own dealings with our mortal nature.

As a hospice and palliative medicine physician it is great to see this featured by Dr. Gawande. For anyone looking for more palliative medicine info there are a lot of great blogs out there talking about some of the studies featured in the Gawande article. We are working to get our field out in the light more. Thanks again for featuring this article.
posted by ctsinclair at 10:21 PM on July 26, 2010

Great Britain officially is officially the best place in the world! (for dying).

Economist article citing research on hospices from the Lien Foundation.
posted by rongorongo at 3:31 AM on July 27, 2010

I've spent the past few months working on a newspaper campaign to raise money for our local hospice, and couldn't agree more about how wonderful, and how necessary, the hospice movement is (I just can't believe it receives no public funding in the UK, where we have a national health service). I've been to the hospice many times, interviewed about a dozen people who have lost loved ones there, and written up their stories to encourage people to donate. I'm just writing another one this morning. In every case, incredibly, the hospice managed to create some kind of peace and comfort at an otherwise devastating time.

One of the loveliest interviews I've done was when I had the privilege to meet Dr Derek Doyle, another hospice movement pioneer, who spoke about dying with such grace and gentleness - I can't think of a better person to have at your bedside (you can read some of his stories here).

We talked for an hour, but I think the one thing he said that really summed it all up was:

“Most people fear dying, not death. They’re terrified of uncontrolled sickness, uncontrolled pain, the doctors shrugging their shoulder, saying ‘There’s nothing we can do,’ but there’s always something you can do. It may just be sitting down beside them for a minute and talking, in a few moments of human companionship.”
posted by penguin pie at 3:50 AM on July 27, 2010 [1 favorite]

she said it was because of us, the way we kept vigil but I don't know how she saw bravery, we were all scared shitless.

My mother's boyfriend died of terminal lung cancer last week. I went up for a week last month to help my mother with caring for him (she's a former nurse and currently CEO of a hospital). While I was there, his sister and son were also "visiting." I say "visiting" because they did everything to avoid being in the room with him. I was shocked one afternoon when, in the middle of speaking, he coughed up some bile and the sister and son literally ran out of the room. My mother and I quickly cleaned things up, while the sister who had taken the phone when she fled remained in the garden weeding and chatting for 15 minutes. I honestly don't know how she could have such little regard or concern for her brother's welfare or feelings.

I'm sure that nurse has seen hundreds of similar scenes.Watching someone you care about die is terrifying and lots of people succumb to that fear by making excuses and avoiding the situation. But bravery isn't about the absence of fear, it's about overcoming fear. That nurse saw how scared you all were and that you were strong enough to keep vigil anyway. That's how she saw bravery.
posted by miss-lapin at 6:08 AM on July 28, 2010 [5 favorites]

Dr Gawande was interviewed on Fresh Air this afternoon and it was, not surprisingly, very enlightening.
posted by nevercalm at 2:55 PM on July 29, 2010 [1 favorite]

I did end up reading Gawande's article during the 9 days when I was visiting my father in the hospice facility. I found the article incredibly powerful and thought-provoking. Sitting with a dying person is nothing like anyone could imagine if they haven't been through it. I think the hospice nurses, aides, and staff are some of the most amazing people on the planet. The experience changed my life, made me want to become a better person - and having this experience in conjunction with reading Gawande's article definitely made me want to make sure that both my and my fiance's advance directives are in order and that we have spoken thoroughly to each other and to other close friends about our wishes for end-of-life medical care.
posted by matildaben at 12:38 PM on August 23, 2010

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