End-of-life care/heroic measures

Great Debates
1

This is really a two part question, and the first part is more of a general question, but I thought I’d put both parts here.

  1. I know that England is considered to be the world leader in palliative/end-of-life care. I have heard that one of the reasons is that providers as a whole do not employ treatment options that are considered to be futile. I have heard, anecdotally, for example, that an 80-year-old with long-standing, severe COPD who came to the hospital in respiratory distress would not be intubated. Does anyone know if this is true, and if so, could they point me towards specific guidelines or give other examples?

  2. Assuming (1) is true, should we adopt these policies in the united states? Should we not intubate or provide cardiac resuscitation to people who, for example, have end-stage dementia? or metastatic cancer? Or another hospice-qualifying condition? (examples here.)
    Right now in the US the patient or family decides (usually the family I have found) whether these measures will be undertaken. IME, almost never have these issues been discussed beforehand (although I work with a population that is not necessarily very health-savvy and maybe other health care professionals have different experiences) and families usually want “everything done.” Doctors generally have to do what the family wants, even if they know that the likelihood of any of these interventions having a good outcome is low. Interestingly, doctors in other situations do have a right to withhold treatment if they suspect that it will not be efficacious or that the risks outweigh the benefits; however, those situations are not literally life-or-death in the next couple of minutes/hours.

There are two drawbacks to aggressive interventions in situations where the likelihood of good outcomes is low.

  1. Prolonging the suffering of someone who is already very ill
  2. The expense/resources question.
    So to address the second point: should the very few people who are paying for this treatment entirely with private funds have the right to ask more be done? Is that ethical?

My opinion going into this (but I am open to change depending on what others say) is that it is doctors should be able to say something like, “I’m sorry Ms. Smith, but in this situation we don’t think we should intubate your husband and place him on a breathing machine. We think that this would be an uncomfortable procedure for him and one which wouldn’t really make his life better in the long-term. We do think he is approaching the end now, and we want to make him comfortable. We would encourage you to contact anyone else who would like to be with him at this time and ask them to come to the hospital and we are happy to help you with that as well.”

I don’t think any of this should be based on the patient’s ability to pay.

What do you all think? Also I know this isn’t usually encouraged in Great Debates, but I personally am interested in hearing anecdotes as well.

2

I don’t have many answers, but I do have one more thing to consider to throw into the ring: we don’t “do everything,” because doctors (almost) never tell us ALL our options. They pre-select from a couple of plans that they think best, or that insurance will pre-approve, present those, and then let the patient or family choose from that limited list. That’s even assuming they tell the patient/family there are any “options” at all; mostly what I see is the doctor telling the patient/family what they are proposing to do, based on either their professional experience, best practice guidelines, personal preference, or a discussion with their Attending who has to approve the plan of care before the patient has even been briefed. The patient has to ask if there are any other options, and trust the doctor to tell them the truth if there are.

A medical ethicist pointed this out to my nursing class in a lecture once, and it was pretty eye opening. When a person comes into the ER in cardiac arrest, we will perform CPR, we will intubate, we will give him several different drugs we’ve got to try to get his heart started, we may defibrillate if it’s the right kind of rhythm for that. And then all that doesn’t work, and we go tell the family that we’re really sorry, we “did everything,” and we lost the patient. Well, no, we didn’t do “everything”. We didn’t give him a heart transplant. We didn’t place the patient on ECMO. There were, technically, other options that could have been tried, but were never even considered or discussed. That’s a pretty extreme example, but the same thing happens with other health conditions, everything from the choice of chemotherapy agent to the best surgical approach for a hip replacement. The patient doesn’t know what they don’t know.

3

You bring up a good point, WhyNot. And maybe you work with a more sophisticated patient population than I do (for the record, and because I think it very much informs our experiences, I work with a largely underserved population, frequently undocumented, many of whom don’t speak English, and almost all of whom are not healthcare savvy). I don’t really understand what the utility would be of telling these people that we didn’t do a heart transplant, or place them on ECMO (I am not in a facility which does emergency heart transplants in the setting of acute cardiac failure, nor have I heard of that being done). We often ask families when patients are in extremis, “do you want us to restart their heart and put them on a breathing machine?”
The answer, from terrified/anxious/stressed families is almost always “yes.” But I don’t think they quite understand, often we are not in a situation to tell them in the limited period of time (and really, these conversations should happen in the outpatient setting, by a PMD who know the patient and whom the family trusts), and I don’t think giving them more information/options at that time is what they need.

I have, in the clinic setting, often provided patients with options (for example with PSA screening). More often than not they just ask me what I think should be done. I think part of the reason we go through all the training we do as healthcare providers is so that we can give people a reasonable set of options based on what, in our training/experience, think is most appropriate. Giving patients all the options and risks/benefits of each is almost like asking them to go to medical school too.

4

I didn’t read the article, but I think Obama just authorized payment for end of life discussions. Isn’t that the best answer? And have them say every five years. I know that as people age their answers change. My father-in-law is almost 100, and wants no extraordinary measures, and as I’ve aged this appeals to me less and less.
I understand that families don’t want to deal with it ahead of time, and might feel guilt about authorizing anything less than the maximum. That is why having the individual decide ahead of time is best.

5

Absolutely. (And I serve mostly underserved as well. Mostly low income, low education minority seniors on Medicare. Teaching is 95% of my job.)

I don’t think he was saying it to suggest that we put your run of the mill acute cardiac arrest on ECMO. There are good reasons not to do that. But his point (and my point) is that we tend to think that “everything” really means, “everything,” and it usually doesn’t.

People who don’t like universal health care point to “death panels” and “rationing of health care” as a slippery slope. The idea that your government, through your doctor, will decide what care you’re going to get, terrifies a lot of people. What they miss is that already your doctor decides, to a very large degree, what care you’re going to get. She’s guided by several factors, as I said, but the idea that our US healthcare system is so superior because we don’t ration health care is…doubtful. We do ration health care already. We just call it by more palatable names, like “best practices” or “insurance policy limitations,” or “hospital policy.” It doesn’t come from the government, perhaps, but it’s no less real for all that.

I’m all for patient autonomy. It’s kind of my thing. But, like you, I do wonder if people can really hear and process - in the moment of being fearful of death - the horrid things that, for example, chest compressions and intubation, can do to a body…especially an old, frail body with preexisting health conditions. It is awfully tempting not to mention it as an option, because you know, you just know, that it will not go well. But that way lies paternalism, which I’m also not comfortable with.

My only answer is to do as much education as possible, to the general public and to my patients directly, about end of life care well before it’s ever a personal issue. Before they need it. Tell them about hospice and palliative care (and how the two are not the same thing.) Encourage them to use resources like mydirectives.com to explore and understand and, most importantly, communicate their ideas and wants. Share videos like zdoggmd’s “Ain’t the Way to Die” so people can see that even doctors (and nurses) sometimes think we’re doing too much of “everything” at the end of life, and encourage discussion about that. Way before it’s ever needed in practice.

6

I work as a hospitalist in skilled nursing facilities. In my experience, the family members of severely ill patients that want “everything done” usually have issues with denial. It’s not just lack of medical knowledge on the part of family members. I think most physicians who work with the very ill elderly have stories like this. I’ve had patients present with end stage dementia, unable to speak, eat, or transfer, basically in a vegetative state. Occasionally a family member will want a full work up because the patient “was completely normal last week, and now look at her.” These are patients that have obviously been ill for at least several months. In these situations educating the family doesn’t usually help.

I think we do need formal guidelines on when it is no longer appropriate to provide aggressive diagnostic work up and treatment. I don’t know what the situation is in the UK, but my experience is when I refuse to proceed with what the power of attorney wants, they will just go to another physician that will provide the requested treatment. I’ve never seen aggressive treatment make a difference in the outcome of terminally ill patients. Unfortunately, I think the whole outcry we had about “death panels” has effectively killed the development and usage of guidelines on when aggressive measures are no longer appropriate in this population.

I could list all kinds of treatments, but here are a few specific things I’ve seen. A patient with end stage dementia receiving cholesterol lowering mess and having lab for cholesterol levels every three months. I’ve also seen patients with metastatic cancer and advanced dementia undergo heart bypass surgery or hip replacement surgery. As far as I can tell, none of those procedures ever actually helped the patient.

7

One of the common fears I hear from people is that the docs are “giving up” not because their loved one’s condition is hopeless/terminal/not fixable but because it’s being done to save money. Basically, a fear that medical decisions are being made based on wealth and not medicine. I’m not sure how you get around that one.

8

To the best of my knowledge and belief, that is what I would expect NHS doctors to say, without any financial considerations coming into play. But it’s easier said that done.

On the one hand, I think this country has less of a cultural tendency to imagine death is optional and can always be fought off with something or anything, and more of a tendency to trust doctors’ judgement. On the other hand, not everyone thinks like that, and I’d expect any NHS doctor to have experience of finding The Conversation more difficult with some people than with others.

Moreover, at a policy level, there are arguments about precisely how to implement what might seem to be uncontroversial principles in end-of-life care, and certainly one attempt at defining an operational protocol that was widely adopted (the Liverpool Care Pathway) was furiously criticised when it was said some people were applying it too mechanistically and causing unnecessary pain and discomfort as a result. Understandably, no-one at the top of the NHS wants to lay down detailed protocols about this, and leaves a lot to the discretion of local clinical managers: classically, the only NHS guideline on using “Do Not Resuscitate” notices* is that local organisations and hospitals should have developed and published a policy on it in consultation with their wider community.

*(This is not some hard-hearted bureaucratic money-saving “death panel”, it is a recognition that aggressive attempts to re-start someone’s heart at the risk of cracking their ribs might not be the most caring treatment for someone within hours or days of inevitable death).

This is what the NHS publishes on end-of-life care for patients and the general public

This is the last set of centrally-published advice and guidelines on end-of-life care to NHS professionals

9

Most telling is that doctors themselves say that they would refuse aggressive end-of-life treatments for themselves. If it really was just an attempt to save money, rather than being the most compassionate thing to do, this would likely not be the case.

10

You left out the word “No”, as in ,“No, we’re not going to do that.”

11

This is totally anecdotal and second-hand, but my sister worked on a geriatric floor as a secretary years ago, and she saw a number of families insist on CPR being done on a octo- or nonagenarian patient with dementia or CHF. With the resulting broken ribs.

She said it was usually the family members who’d most neglected their parent/grandparent in life who were most insistent. The stories families would tell her!

12

My parents were very clear to us for years, no heroic measures. When our time comes, let us go. So when they were getting along we had the “Do Not Resuscitate” signs right there on the refrigerator door for both of them.

A good buddy of mine who ran the rescue squad told me if we thought it was to that point to not even call them.

In our state once the rescue squad was called and they stepped foot on the property they were required by law to use all reasonable measures to resuscitate

13

Unless, sometimes, they really *were *normal last week. I have a patient now who had a sudden, and I mean, really *sudden *decline. I sent her to the ER. They sent her home, because she’s 97 years old and has dementia and that’s just how people are near the end of life. This despite my phone conversation with the ER nurse, and my written notes, documenting that a week ago, the patient was not showing any signs of dementia, or even forgetfulness, and she was ambulatory and eating well. They looked at her age, made a whole lot of assumptions and sent her home. A week later, I sent her back…and they sent her home again. A month later, she was taken by ambulance to another hospital, who found cancer on an MRI. :frowning:

The first hospital - a much “better” and more respected hospital than the second - never did an MRI, or a CT scan (I believe they did do a CXR), despite the fact that* they were the hospital that treated her for cancer 6 years ago!* They looked at her age, because of course 97 year old women are weak and frail and can’t stand unassisted. I’m so mad at them right now. They didn’t even suggest home hospice, didn’t tell her or her family that “well, maybe the cancer’s come back, but here’s why we wouldn’t suggest aggressive treatment,” just sent her home to where she lived *alone *with no explanation for her sudden decline. She doesn’t want treatment for the cancer, she just wanted to know why she’s so sleepy all the time. Now that she knows, she’s resigned herself to moving to a skilled nursing facility. They could have saved her and her family a month of stress and worry (and Medicare the cost of two ER visits and an ambulance ride) if they had taken her sudden decline more seriously the first time.

So…it works both ways. We do too much sometimes, and not enough sometimes. And sometimes people don’t want to treat, they just want to know.

14

I don’t understand why people seem to believe that near the end of their lives, cost should not be a factor. How much is it worth to restore someone to what level of function? And, the costs go far beyond the immediate costs of a procedure, to include the financial and emotional costs on family and society of longterm care.

As long as the person making the decision does not have to face those costs, it is easy to approve no end of heroic procedures.

15

NHS is currently implementing a new program to record and make available patients end of life requests to avoid problems where treatment is provided or withheld based on a lack of information. They’ll have to make sure they’ve stated what kind of treatment they want, but when that information is available it’s going to cut down on some of the arguments when the patient is unable to participate. As I understand it, the main problem was a lack of any information available, emergency responders would not know whether or not to use life saving procedures, and the information was not distributed to all hospitals previously.

16

I had to make end of life decisions for my father, who went from healthy to a stroke to dead in a couple of weeks, so I have some experience here.

No, I do not want my doctor deciding against putting me or my loved one on life support without consulting me. It is not the doctor’s job to decide it’s time to go.

It’s the doctor’s responsibility to tell the patient/family the risks and benefits of the procedure and the likelihood of eventual recovery with or without it And if the doctor’s professional opinion is “he’s going to die soon whether we do this or not,” it’s the family’s responsibility to take the doctor at his word.

17

Well, but this is the thing. Doctors all the time decline to offer treatments/procedures, and actually don’t give you the option. As WhyNot stated above, for example, ECMO is rarely even offered because it is almost never a good solution. There are numerous other examples, such as oncologists deciding not to chemotherapy to a patient who is too ill to handle it. Usually the conversation is simply, “Unfortunately, there are no treatment options at this time.” Rarely is it, “You are bedbound and vomiting constantly. For that reason, I would generally advise against chemotherapy; however, we can try it with the understanding that it would in all likelihood just end your life more quickly, but there is a slim chance it could help treat the cancer.” Other examples include surgeons declining to perform procedures on patients that are too high risk, even life-saving ones such as cardiac bypass.

Generally, it is considered the prerogative and responsibility of the doctor offering the treatment to determine if it is worthwhile. That’s one the main reasons they underwent so much training–to determine which therapies are best suited to which individuals (and sometimes the only best therapy is palliative). The provider is also, to some degree, assuming the risks if something goes wrong with the potential treatment, which is why surgeons won’t just operate on anybody. But with questions of resuscitation and intubation, we take the opportunity not to offer a certain treatment away from the doctor.

18

I think Gestalt’s point of doctors having a frank discussion with the family is the right way, but I’d like to teach the doctors to make two points:

  1. If an intervention is inadvisable, the doctor should specifically say that if it were him/her or his/her loved one in that situation, the doctor would not do that intervention.

  2. The doctor should let the family know that it’s OK not to intervene.

I think a lot of people have the idea in their heads that they have to do everything possible, and we should let them know that it’s OK if they don’t.

19

But why *not *say:

Or even say the first part. Just say, “In your condition, chemotherapy isn’t likely to help you and will in all likelihood just end your life more quickly and painfully.” Don’t open it to a discussion of the slim chance, but make it clear that chemo is what would sometimes be done, and why it shouldn’t be done now. What’s the harm?

This is the thing I see time and time again. (And I think this has to do with me being a nurse - specifically, a home health nurse, someone who sees the same patient weekly for months and develops a close relationship - and you a doctor who sees the intermittently for short periods of time.) People, largely, want to know. Not every nitty gritty detail like you learned in medical school, but the big picture and the why. I don’t understand why so many physicians are loathe to share that.

Is it part and parcel of why doctors are so reluctant to share potential side effects or adverse events or risks? I see the boilerplate informed consent paperwork, and it’s just useless generalized bullshit. And that leads to angry patients in the long run. When my husband’s surgeon tried to reduce (reverse) his colostomy, they couldn’t get a good seal, so he ended up with an ileostomy; waking up like that nearly destroyed him. Not because he couldn’t deal with an ileostomy, but because no one ever told him that it was a potential outcome of the surgery. And yet when I looked it up after the fact, it turns out that a *huge *proportion of colostomy reductions end up with a temporary or permanent ileostomy. It’s a very likely, very well known (to surgeons) risk of anastomosis. Would he have had the surgery if he had known? Yes, probably. But he wouldn’t have had the shock, terror and depression that resulted from waking up with a bag still on his belly.

I think this is great: "“I’m sorry Ms. Smith, but in this situation we don’t think we should intubate your husband and place him on a breathing machine. We think that this would be an uncomfortable procedure for him and one which wouldn’t really make his life better in the long-term. We do think he is approaching the end now, and we want to make him comfortable. We would encourage you to contact anyone else who would like to be with him at this time and ask them to come to the hospital and we are happy to help you with that as well.” YES! Absolutely, that’s what doctors should be saying. So why aren’t they?

Why are doctors so unwilling to share information that might help the patient understand the situation better, even if it doesn’t change the plan of care?

20

Sorry, I don’t think I was being clear. I’m totally on board with telling people why we wouldn’t offer chemo (or other treatments). I was adding the “slim chance” information to describe one scenario in which a doctor might truly put all the options on the table and let the patient or family decide. In that scenario, I think the provider would have to mention the “slim chance” in order to give the patient full information for them to make a decision.
If, however, the provider has previously decided chemotherapy will not be offered, I think they have an obligation to explain why (and IME I think most doctors do that, but it sounds like your experiences have been different).