What a disgrace this Doctor is - 1241717

I do not like the Daily Mail which runs this type of story all the time and will not have it in my house.I do think however that this is a valid point of view.I have already decided that when Philip has gone I will not have surgery or radiation if I get an aggressive cancer but would have chemo.We all have a choice
Regards
Christine

Dr Scurr's column was prompted by (and quotes) a longer and more thoughtful article by Dr Ken Murray, from the University of Southern California, which I imagine many US members of GRACE will have already seen:
http://zocalopublicsquare.org/thepublicsquare/2011/11/30/how-doctors-di…
To my mind Dr Scurr is conflating two things - 1) treating cancer with chemotherapy at dx; 2) aggressive and often futile interventions at the end of life (CPR for example). He is also, in my opinion, generalising across two healthcare systems (US and UK) which are very different. I very much doubt anyone will be trying to give me CPR at the end of my life; quite the opposite, in fact. When I was in hospital yesterday I was trying to check whether there was a DNR (do not resuscitate) notice on my file. The idea that British doctors are inflicting pointless treatments on cancer patients is completely foreign to my experience, as is the idea that anyone would enter a hospice asking when their treatment would start. I'd be interested to hear cosmo72's views from an Australian perspective.

I think that this view is an oversimplification -- that just about every oncologist I know would recommend well-tolerated palliative chemotherapy to their own family or take it themselves -- but I think the point that less informed patients overestimate the likely benefit of some quite aggressive interventions has a kernel of real truth. I personally would favor not being resuscitated or put on a ventilator if I had a metastatic cancer and my disease were progressing through treatment, as I know that the probability of a good result is miniscule and the probability would be that my family would be left watching me with tubes and drains over weeks before being left to decide when to stop the support. But the doctor here also paints a picture suggestive that palliative therapy is pretty meaningless if it doesn't significantly raise the chance of living another 5 years. In metastatic lung cancer, 5 years is still exceptional (though possible, and far more possible with treatment than without), but we've never seen so many people who live 2 or 3 years who previously would have lived 8 months -- and just about all of that added time is "good" functional time of living well.

At the same time, the concept that "chemo is just horrible poisin" is a very ignorant view. First, there are many different types, with side effects that range from imperceptible to very difficult. Second, the fact that many of our treatments can improve survival, though sometimes very modestly, with very good tolerability means that the barrier to taking it doesn't need to be high. It isn't some Sophie's choice between living longer and living well if the treatment isn't that hard.

I think part of the problem is that many doctors who don't treat cancer are rather ignorant and nihilistic about cancer. The fact is that they often no not a lot more than the general public about the details of what cancer treatment is like and the benefits and challenges it entails (and [i]far less knowledgeable [/i]than most members here), so I think it's a mistake to have them pontificate with grandiosity about their esteemed opinions about it. I'm no diabetes expert, and I don't make sweeping comments about the utility of treating diabetes in the newspaper. It's an error to presume that this person is qualified to speak on the subject with authority.

-Dr. West

Really interesting, cosmo72, thanks for describing how the system works in Tasmania. I am very impressed to learn that you are introduced to a dietician and a pharmacy person. One area of overlap is that patients in the UK also have access to a specialist cancer nurse, which can be amazingly useful.
You made me laugh about throwing out your clothes! I was diagnosed in June and had a steroid-fuelled assault on my cupboards. I was about to get rid of my coats when I thought, hang about, what if I live even till October? It can be very cold in October ... so mercifully I didn't, and I have been glad of them for the two winters since.
Advance care plans are available here as well, and to be honest I am still not sure about the DNR. Thank you Dr West for your comments on this point. I confess to being quite paranoid about being "written off" by doctors who don't know me and just go by my dx. I was also very surprised to read an account by a GRACE member of her father spending time on a ventilator, but then coming off it, which I imagine is very unusual but clearly can happen. So I am still on the fence about that.

I understand, and I think these are personal choices. It's not that people can't possibly come off, but in most cases, even when patients do come off of a ventilator, it's just a matter of weeks of teetering on the brink with many problems before things go south again. And the most common scenario is that the family is left watching their loved one in a remarkably dependent situation, as the window of realistic hope closes off, leaving them forced to decide when to turn off the ventilator. My personal view is that care at that stage is far more likely to merely prolong dying, and that it is much less traumatic for family and friends to let their loved one die naturally than to put them on a ventilator and then be forced to decide when it's just prolonging suffering.

But my own father has a different view. A doctor himself, he doesn't sign his driver's license as an organ donor because he's concerned that if her were in a tragic situation, the doctors might give up on him more easily if he's a candidate for organ donation. My own view is that if I'm in such a bad situation that organ donation is being discussed, I'm not going to concern myself about the potential remote possibility of being maintained alive, especially if I'd be left with extremely compromised function.

My mother, on the other hand, wants us to take her in the woods and shoot her if she develops a very bad cold.

As I said, it's all personal.

-Dr. West

Another aspeCT of this story is the difference between what people would say they would do and what they do do when faced with the reality. Our instinct to live is very strong and will often overcome a simplistic reinterpretation of the facts.

As commented many treatments for people with terminal illnesses like myself are very well tolerated and give a 'bucket' list opportunity. I have appreciated the advance notice of my impending demise and have done things I wouldn't have had the opportunity to do had I been hit by the proverbial bus.

Like Cosmo72 I have a medical power of attorney and advance care plan. It would be a rare person indeed who wants to be kept alive on machines with no quality of life. My advance care plan clearly states no heroic intervention, but I will appreciate some over the top pain medication.

I am also in Australia but my treatment has not been as comprehensive as Cosmo72s as I live in a different state with a different health system. Notwithstanding, I have no complaint, have had little in the way of out of pocket expenses (we have Medicare here and most Australians can't work out why it was such a divisive issue in America) and at this point am glad I am still alive with a few more treatment options available, about which I can make an informed decision.

I appreciate the honesty of this conversation, so I will try to be honest in turn.
Dr West, may I ask directly, have you ever seen a patient come off a ventilator and not die shortly afterwards (by which I mean in a matter of weeks)? I am reminded too of the experience of GRACE member Myrtle, who had to use a feeding tube for a time but was able to come off it and is, thank goodness, still with us. Someone at the time wrote "Never say never", and I was struck by that - ie, some people might specify no to a feeding tube, yet it is possible to come back from it.
Gail, what you say about the gap between theory and practice tallies with my experience. If this had come up before I was diagnosed, I'd probably have agreed with every word that you and Dr West have written. Yet when I was presented with an advance care plan, I felt as if I was being handed a script for a part I could not play: one in which I was supposed to turn down any and all interventions.
I think in truth I am nervous about how the stage IV dx skews the perspective of a doctor - particularly a doctor who knows nothing of the patient (me) and their quality of life. I have had at least one acute admission to hospital where I could actually see the on-call physician turning away and shrugging his shoulders, telling his students (loudly) that the cancer was "very advanced". I trust the doctors who know me, but I am afraid of being written off prematurely by others who don't. It is a measure of my misgivings that on Sunday evening I could be found sidling along a hospital corridor trying to look at my notes to see if I have been labelled DNR without my agreement. After this discussion, it occurs to me that it might be simpler just to ask.
I can't entirely justify my feelings, which seem to me irrational given everything I've heard and read. Maybe it is just what Gail says about the strength of the instinct to live.

Certain Spring,

I was put on a ventilator for nine days following a post-op episode that included kidney failure, a pulmonary embolus, acute respiratory distress syndrome (ARDS), and pneumonia. It was not a fun experience, but it was tolerable for that amount of time. (Admittedly, I was unconscious most of the time.) What was hard about it is that the doctors kept the oxygen set a bit low to encourage me to start breathing more on my own, and so I constantly felt like I wasn't getting enough air unless I really focused on staying calm and breathing carefully. Because of the ARDS, which sort of stiffens the lungs, I couldn't move my lungs enough to get more than what felt like 1/8 teaspoon of air per breath, no matter how slowly and steadily I breathed.

But, I did come off the vent, and here I am almost four years later, so I count that as "not dying shortly afterward"!

I must say, this experience and another post-op one that was filled with different serious medical crises have really complicated my thinking about how to define under what circumstances I would or wouldn't want aggressive interventions. Ordinarily I lean toward being DNR, but then I think of how I was unexpectedly revived after experiencing some pretty steep declines. It's very hard to anticipate all the different scenarios and their likely outcomes.

kimo

(stage 4 colorectal cancer with multiple lung mets)

My ex husband had gullet cancer, after chemo to shrink the tumour he had surgery. He was very ill and on a ventilator for 10 days after complications, he was 72 at the time. If anyone had seen him then they would never have imagined he could survive. However three years later he is living happily in Portugal, still NED and feeling fine.

It's great to hear of such good outcomes after a difficult time, and I have a few patients who are doing great a year or years after coming out from a period on a ventilator. These cases occur more commonly than "never say never", so I don't want to paint this issue with too wide a brush, but we see quite a few patients who are comatose and whose families say, "remember that case on TV about someone who awoke from a coma after 9 years? Miracles happen, so we're going to bank on that." It's incorrect to presume that nobody ever comes off of a ventilator and does well; it's also incorrect to think that miracles are something to hold out for when all other indicators suggest an alternate course is the right one.

The range of outcomes reminds me that there is still a role for individualizing any of these recommendations. I certainly recommend that some of my patients with metastatic cancer continue to be "full code" when hospitalized. The key is to ask whether the underlying cancer or other medical issues would limit outcomes if the acute issue were to pass. Sometimes we have patients who are chronically bed-bound or in chronic pain and unable to eat who still reflexively favor a "do everything" approach, where the best we can hope for is to get back to that same unfortunate status, even if acute problems were to resolve.

-Dr. West

Cosmo72:

I am so envious (ok, jealous) of the supportive care people in Tasmania receive upon being diagnosed with cancer. That's awesome!

Laya

This is a very timely issue for my family. My 80 year old brother is an end stage kidney patient with multiple diagnoses. Since I am his medical surrogate I keep trying to get him to voice his wishes. My 90 year old Mother didn't want to be bothered with thinking about end of life choices ( I know she didn't understand the medical terms---I tried to explain them) . In the end us 4 children (so hard to do) had to all agree to turn the ventilator off after 7 days.

I agree with what certainspring wrote:
"I think in truth I am nervous about how the stage IV dx skews the perspective of a doctor – particularly a doctor who knows nothing of the patient (me) and their quality of life."

I know we individuals view people & situations differently and I think doctors do also. Having a major illness and being old----going into a out of town hospital with medical folks who don't know you can be troubling for all involved, especially if the patient is alone. This is why it is better when a family member or close friend who knows your condition to go along to speak giving new medical personnel info on patient.

I have enjoyed reading everyone's replies.
Anne

I agree that this Daily Mail article seems to take an overly simplistic and blunted view of these issues. Dr. Murray's original article was more tempered but definitely acknowledges real issues that we have struggled with here in the U.S. Dr. Murray was not specifically addressing decision-making for chemotherapy as the Daily Mail article does. As a non-oncologist but a physician who cares for patients with cancer, I do think that non-oncologists can have a skewed view of what living with cancer is like and exactly how sick a patient is who has cancer. A lot of this is due to how our training is set up; the primary venues of exposure in medical training are on the inpatient side of things--medicine wards, oncology wards, ICUs. Of course patients who are in the hospital are sicker than the vast majority of patients with cancer who live outside the walls of the hospital. Consequently, unless you are doing a fellowship in oncology after your basic residency training, you won't really see the patients who do well with therapy, who are continuing to do their regular activities, and who are living their lives. As an aside, we are revamping our training programs to have more exposure to outpatient oncology, rather than only inpatient oncology, to give our future attending physicians a more accurate picture of oncology.

The Tasmanian system sounds great, and I hope to see more supportive services here in the U.S, of course!

In terms of decision-making around invasive/aggressive interventions, I do agree that it is individualized to each patient and their wishes/goals/values. There also needs to be honest consideration of the helpfulness of such interventions--the invasive technology used in an ICU setting. Those interventions and ICUs were not intended for being "destination" therapy, ie, with the goal of remaining on a ventilator in an ICU for the rest of one's life; these invasive technologies should serve as a bridge to get a patient better, or at least to a life outside of the ICU.

-Dr. Harman

I really appreciate the posts by kimo and carol42 - thank you for coming in on this. kimo, your experience sounds really frightening, for you and your family, but I am so glad you are here to tell the tale. carol42, it is wonderful to think of your husband enjoying the Portuguese sunshine!
Dr Harman makes an interesting point - that oncologists in hospital training don't get much exposure to patients who are doing well. However my worst experiences have been with hospital doctors who aren't cancer specialists - eg the time I was admitted to A&E (ER) at the weekend with a temperature/headache, and we were isolated because the admitting (hepatic/liver) team were convinced I was neutropenic. Nobody would listen when I tried to explain that Tarceva did not affect blood counts (I was six months out of chemotherapy so hardly likely to be neutropenic). A nervous junior doctor insisted on admitting me, even though I was crying and asking to go home and be with my husband. Next time I will be firmer and discharge myself.
I think there is a clear conclusion emerging from this thread, which is that we should all move to Tasmania :)

certainspring & forherbie,

I think most oncologists recognize that people with stage IV cancers (lung and others) can do very well for a lung time. Stage IV breast and prostate cancer have been viewed as a fairly chronic disease by many in the field for a long time, and our more recent outcomes in stage IV lung cancer are making it realistic to think in these terms for lung cancer as well. Other cancers, such as chronic lymphocytic leukemia or some lymphomas, can have a prolonged course that extends well over a decade, regardless of treatment (or no treatment). I would say that most oncologists are far more attuned to performance status as the key factor that is relevant here, rather than merely the fact that someone has a stage IV cancer. However, I think it's fair to be wary that many other doctors presume an imminently terminal prognosis just from seeing that a person has metastatic cancer, just as many patients have such a fear when they first learn of their diagnosis, to find that the reality is far more nuanced than that.

It's true that doctors don't do a great job projecting what their patients want. What I think we don't confront is the issue of whether it's really a god-given right for people to be able to say that they want all care possible, forever, including being put on a ventilator for as long as they're alive, if it is their preference, especially if the costs are borne completely or nearly completely by society at large. If a family decides that their 92 year-old grandmother who can't communicate because of severe Alzheimer's on top of metastatic colon cancer should be put on a ventilator and put on a feeding tube while they all hold out for a miracle, is it truly fair to expect that the medical system bear the cost of what would be considered futile interventions by just about any reasonable person? Would they make these choices if the family had to pay, or paid even a meaningful fraction of the costs?

Yes, that example is rather extreme, but a walk through many ICUs today will illustrate that this is actually not as far-fetched as you'd think. And I think that one of the greatest challenges in the US, at least, over the next couple of decades is going to be about wrestling with the idea that there is simply no way for society at large to foot the bill for all of the medical care available that everyone might decide they want. And in that case, I think the first place we need to look at costs is in settings where medical futility is a very, very strong argument. Should we really spend $100,000 for 3 days of ICU care for a terminally ill person with liver failure and renal failure when that would fund pre-natal care for a huge number of people in the same area for months?

And yes, while it's true that people may have a different perspective when they're faced with a situation directly, I don't think that it's fair to say what the rules of the game should be based on knowing the cards in your hand. These decisions about what rules of the game are fair should be made based on what would be fair if you aren't already looking at your cards.

-Dr. West

Anne, I am sorry about your brother. I should have said that before. It is hard to be the one with the burden of making these decisions.
Dr West, I don't understand the cards-in-the-hand analogy?
The scenarios you describe are completely foreign to my experience. I have had such cases recounted to me by American doctor friends (the 98-year-old grandmother with Alzheimer's and colon cancer in the ICU). They are almost impossible to imagine in a UK context, where healthcare is funded out of taxation and has to be rationed in consequence. So I am coming at it from the other end of the spectrum. It would be interesting to hear from the Australian members about attitudes in Australian states. Are cost pressures are seen to influence treatment and care at the end of life? and do hospitals have a culture of continuing to treat patients till the bitter end?

I should also say to Anne that I'm sorry to hear about your brother; I didn't mean to get so caught up in the big societal questions that we lose sight of the importance of real people. I hope you're doing OK, with so much to deal with.

[i]certain spring[/i], I think our issues in the US are related to two central issues. We are horrible at accepting the inevitability of death and do a very poor job acknowledging that the arc of life has a trajectory with an end. This is a cultural issue that is partly a by-product of decades of thinking that "if we can put a man on the moon..." and highlighting the technological wonders of everything from medical developments to the latest iPhone model should now enable us to solve any problem if we just wish it so and spend enough money. The second issue is that our health care system is incentivized by [b]doing[/b] things -- whether they are necessary or not. Hospitals get paid for having full beds and doing many procedures, doctors are paid for seeing patients often and doing any procedures they can do, drug and equipment companies are paid for treatments being sold/administered, and many patients have come to expect that you really haven't had a satisfactory doctor visit unless you walk away with a prescription for something.

As for the cards analogy, my point was that I think there's a problem with saying,"If you haven't been faced with this position, you can't say what people should do." We all have biases, and the idea of how societal resources should be allocated should ideally be made objectively, based on what will help the most people the most. If the committee of people who decide on how a payer should allocate its resources is filled with people who all have the same extremely rare disease, they might decide that 75% of the resources should go for research on that rare disease. That's not what's best for a broader society, but rather a by-product of the people making the decision having a very biased perspective. So to me, the issue of someone with a particularly poor prognosis saying that our system should pay for the cost of all treatments that could be considered is like someone who sees their poker hand with two jacks (or knaves, if you prefer) in it who then declares that jacks are wild cards. That perspective may be a product only of knowing that you are the beneficiary of such a policy, which wouldn't have been your perspective if you had "equipoise" of not knowing your situation and viewing the whole picture from a neutral vantage point.

-Dr. West

I wondered when cost was going to enter the conversation. Thank you, Dr. West, for bringing up the business side of things. Physicians rarely discuss with their patients how cost effectiveness can drive decision making.

Debra

Speaking of cost, this came out in one of our local papers last week and has been generating a lot of discussion. A local journalist reflects here on her recent experience seeing her elderly father who had dementia admitted to the hospital. He ultimately ended up in the ICU... http://www.mercurynews.com/cost-of-dying/ci_19898736?source=rss.

-Dr. Harman

Expressions of frustration about a doctor can arise from negative experiences or perceived shortcomings in care. It's important to voice these concerns constructively. A feedback system can help gather patient experiences, allowing healthcare providers to understand areas needing improvement and enhance their services.