Turn away from interventions that merely prolong dying

“Twenty years ago, I helped save a man’s life.”

So begins this New York Times essay by Peter Bach, MD, where he talks about the inadequacy of resource use at the end of life as a policy metric. Now, I am not very fond of policy metrics, as most of you know. So, imagine my surprise when I found myself disagreeing vehemently with Peter’s argument. Well, to be fair, I did not disagree with him completely. I only disagreed with the thesis that he constructed, skillfully yet transparently fallaciously. Here is what got me.

He describes a case of a middle-aged man who was experiencing a disorganized heart rhythm, which ultimately resulted in dead bowel and sepsis. The man became critically ill, the story continues, but three weeks later he went home alive and well. This, Dr. Bach says, is why end of life resource utilization is a bad metric: if this guy, who had a high risk of dying, had in fact died in the hospital, the resources spent on his hospital care would have been considered wasted by the measurement. And I could not agree more that lumping all terminal resource use under one umbrella of wasteful spending is idiotic. Unfortunately, knowingly or not, Peter presented a faulty argument.

The case he used as an example is not the case. Indeed it is a straw man constructed for the cynical purpose of easy knock-down. When we talk about futile care, we are not referring to this middle-aged (presumably) relatively healthy guy, no. We are talking about that 95-year-old nursing home patient with advanced dementia being treated in an ICU for urosepsis, or coming into the hospital for a G-tube placement because of no longer being able to eat or drink. We are talking about patients with advanced heart failure and metastatic cancer, whose chances of surviving for the subsequent three months are less than 25%. And yes, we are also talking about some middle-aged guy with gut ischemia, sepsis and worsening multi-organ failure whose chances of surviving to hospital discharge are close to nil; but in his case, instead of being clear from the beginning, the situation evolves.

So, yes, the costs of end of life care, and specifically hospitalizations, are staggering. But more importantly, among patients with terminal illnesses like metastatic cancer, advanced heart failure and dementia, hospitalizations and heroic interventions at the end of life cause unnecessary pain and suffering, and without much, if any, benefit in return. Their families and caregivers suffer as well, and many studies suggest that these caregivers are not interested in prolonging suffering, provided they are aware of the prognosis. Unfortunately, just as many studies suggest that communication between doctors and patients’ families about these difficult issues is less than stellar.

So, let me play the devil’s advocate and pretend that I support end of life resource utilization as a quality metric. If I did, I certainly would not be interested in depriving Dr. Bach’s middle-aged acutely ill patient of the chance to survive. In fact, my aim would be to make sure that we align resource use with where it can do most good, and turn away from interventions that are apt merely to prolong dying.

Marya Zilberberg is founder and CEO of EviMed Research Group and blogs at Healthcare, etc.

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  • Anonymous

    Wrong on multiple levels. 1. Define futile in numbers that the government is willing to accept. Hasn’t been done, won’t be until and unless the system actually collapses because no politician or bureaucrat is going to be willing to be the guy that says 1/10 is OK but 1/100 is “futile”. 2. Changing the guy’s age to 95 and implying that should change your management immediately triggers an age-discrimination tort. 3. Who are you to decide that the 95 y.o.’s life is not worth living? As far as you know advanced dementia patients are living in a wonderful happy world of flowers and butterflies. Doubt it, but it’s the patient’s (or their designee’s) right to decide.

    Oh right, the government is paying for it so the government gets to decide what to pay for — but the government is too cowardly to actually make those calls so they are not-so-subtlely trying to push it onto the medical community while refusing to actually come up with guidelines that they will back. Don’t fall for it.

    • Anonymous

      Bladedoc.  Correction to your last paragraph “the government is paying for it..”  It’s not the government, it’s the American people.  End of life care consumes a disproportionately large amount of health care resources.  Unfortunately, like many resources, medical resources are NOT unlimited.  With an aging population funded by medicare, if more 95 year old patients are consuming a large portion of resources, that potentially means less available for the 65 year old who has a longer life expectancy.  When it comes to health care allocation, in our current state of limited resources, physicians and society must be willing to accept that funds and care, at times, may need to be “rationed” until health care policy changes.  

      • Anonymous

        Sure. I agree. Now Let’s see the government actually state that they will only pay for (or to get pedantic, allocate the money that the taxpayer was forced to give them) treatments that have an X% chance of success — whatever that % is. Let them come out and state that no we won’t treat that urosepsis in the demented patient because they have a life not worth living (Lebensunwertes Leben, for the historians among us). I for one will not be coerced by a cowardly government into being the enforcer of a rationing policy that the payer is unwilling to elucidate.

        • Anonymous

          I agree.  I don’t think any practitioner, myself included, wants a person or group of people not actively involved in the patient I am caring for dictating what is appropriate in a given situation.  Perhaps a culture shift in America is really what I’m hoping for.  “Futile care” is a nebulous term, yet using limited resources on that septic demented 95 year old for a month stay in the ICU at a cost of literally millions shifts money away from other care/research and time away from other patients in a staff limited hospitals.  The options for the problem include increasing our resources or limiting how we consume them.  Neither an easily implementable solution!  Appreciate the commentary bladedoc.

          • Anonymous

            I agree. In my opinion the fundamental problem is that we are trying to separate rights and responsibility.
            Bill Bromberg

  • http://makethislookawesome.blogspot.com/ PamC

    I think it should always be up to the individual whether they wish to prolong dying or not. Whose to say they don’t get another day with their grand kids? The “administration”? Where does the line get drawn and who gets to draw it? 

    The arguments you present could be just as much straw-men… medical stories are anecdotal— always— because no human body is the same. As such, it’s always difficult to make broad, sweeping decisions for a group. 

    Could we, instead, perhaps, leave it up to the intelligence of the people *in* the situation? They seem a bit more qualified to me than, say, any bureaucrat at their desk in DC.

    • http://profile.yahoo.com/XJALXLDUQUPIOP4JJ7JWACJRC4 Missy

      No one is saying that government should control these decisions.  What we are saying is that the people involved need to be educated by the medical professsionals about pros and cons of treatment choices.  This is not happening anything close to often enough.

  • John Key

    Both commenters above are more nearly correct than the writer, IMHO.   But this is a topic that will be addressed again and again.  And anyone who thinks that “death panels” are not in the future is just kidding himself.

    • http://profile.yahoo.com/XJALXLDUQUPIOP4JJ7JWACJRC4 Missy

      I have worked as a hospice nurse for many years, and even our terminal patients are never denied care that they or their families want.  If they want care that is more aggressive than the hospice plan of care covers, they simply revoke hospice (one signature on one piece of paper) and go back to their regular medicare or private insurance benefit.  Talking about end of care issues is NOT going to result in death panels.

  • http://www.facebook.com/people/Steven-Reznick/100000549195050 Steven Reznick

    The decision on providing care and at what level must remain the patients or their designated authority. As a nation and a community we must do a much better job of educating the public about choices and options and the consequences of these choices. We must additionally make sure that these decisions are reviewed annually ( how about when you submit your Federal tax forms )  and that the data is readily available. 
    I see elderly demented individuals who have not addressed these issues when they were competent to do so and do not have family. Their legal affairs are handled by impersonal law offices or court appointed individuals who never choose palliative care for medical legal reasons or plain selfishness. They get a pay check if the patient survives. Discussing palliative care and end of life issues is the responsibility of all physicians who care for the elderly and chronically ill. Its not easy. The last time I tried to discuss these issues with the wife of a long time elderly severely demented individual now living in a lock down Alzheimer’s unit because his wife could no longer live with his behavior I was less than successful. After spending 45 minutes outlining options and choices and resources I asked the wife if she understood what I was discussing. She answered ” Yes I do, you want me to kill my husband.”   We actually had discussed a Do Not Resuscitate form and a palliative care consult.

  • http://onhealthtech.blogspot.com Margalit Gur-Arie

    “So, yes, the costs of end of life care, and specifically hospitalizations, are staggering.”

    Are they? How much do we spend on all “95-year-old nursing home patient with advanced dementia” every year?

    • http://twitter.com/murzee Marya Zilberberg

      Margalit, that is a great question. I just did a review paper for Seminars in Respiratory and Critical Care Medicine where I estimated some of these numbers. I can let you know when the issue comes out later this year. Looking at terminal dementia as an entity, hospital costs are between $1.5 and $5 billion based on what is in the literature. And this does not include what is termed “profound dementia.” 

      Marya 

      • http://onhealthtech.blogspot.com Margalit Gur-Arie

        Thank you Marya. This is the first time I see an actual number attached to this. Please let me know when the paper gets published. I would very much like to read it.

    • http://www.facebook.com/people/Steven-Reznick/100000549195050 Steven Reznick

      In my community the flow of elderly demented from the skilled nursing facility to the acute care Emergency Department using the paramedics and 911 system is a daily repetitive occurrence. The treating physician is rarely given the choice to treat an exacerbation of a chronic illness on site or the development of  a new minor illness. The mantra is ” copy the chart for transfer and call 911″  There are clear financial incentives for the facility to move out a patient who has been there for several weeks and replace them with a new one coming out of a 3 day or more stay in the hospital. The patient then spends 5 or more hours without food or water lying on a gurney in an emergency department filled with acutely ill and infectious individuals. By the time they are evaluated by staff who do not know the patient ,it is extremely easy to find a reason to keep them.  At best they are dehydrated with elevated BUN and creatinine by the time they are seen. The SNF and nursing home facilities do not have the staff or training to treat these minor crises. The families have not been educated as to why it might be a good move to keep mom on site and try to treat the problem rather than be transported to the ER. There have been few if any meaningful discussions about end of life issues and choices . The airwaves and print media even the buses driving by are carrying ads proclaiming call 1 800 Lawyer if you suspect elder abuse. The patient and family are paying a fraction of the true cost of the trip and stay at the hospital. The paramedics are happy to have another trip on their route sheet to justify an increased portion of the local budget directed their way at the next budgetary hearing.  The hospital is thrilled to get the business for the ER which in the case of a Medicare patient is a profit center.  Its big business with the patient, the doctor and taxpayers footing the bills the only losers. It will only change when we can staff the facilities with young aggressive nurses and physicians or midlevel providers who are given the resources and support to treat these chronically ill individuals on site appropriately and compassionately. There will be patients who will be labeled ” DNR” but there also should be patients who are not moved to the ER or hospital unless you can not provide sufficient comfort and palliation on site. Palliative programs in these outpatient facilities and in the community must become acceptable and the norm and be available and acceptable to an educated community. I am not advocating euthanasia. There is however a distinct difference between treating a pneumonia with antibiotics and respiratory therapy on site knowing that the patients quality of life was non existent before the acute exacerbation and the patient and family are comfortable with on site treatment rather than acute hospital ER intervention and admission.

      • http://onhealthtech.blogspot.com Margalit Gur-Arie

        Why is the treating physician rarely given a choice to treat on site? Is this nursing home policy, or is it shortage of physicians that would respond to a call and come to the home? Do most nursing home residents have a PCP?

        • http://www.facebook.com/people/Steven-Reznick/100000549195050 Steven Reznick

          For medical legal reasons and to meet both state and federal requirements they have their own protocals. They may or may not call you that they have called 911 and the patient is on their way to the ER . You sometimes find out once they are already there.  I believe it has nothing to do with physicians . It is all about fear of liability, failure of patients and their health care surrogates to deal with end of life decisions in a mature and timely fashion ( yes end of life issues are now discussed while the patients are hospitalized and while they are at the SNF for rehab as a quality measure ) . Typical scenario. Mrs Jones is elderly and chronically ill with an impaired cognitive function. She develops an upper respiratory infection. I see her and prescribe appropriate respiratory and nasosinus care. While congested and coughing as part of a normal recovery and course of the illness, the patient speaks to an out of state relative and complains. The relative calls the nursing staff and demands that the patient be taken for medical care immediately. 911 gets called. I get called and told the patient ” is heavy on the chest.”   I am not given the opportunity to make the seven minute trip to the facility to evaluate and treat and decide for myself if the a trip is warranted. The paramedics arrive and assess the patient and rarely do not suggest the patient go to the ER for an evaluation. This is the way it works unfortunately even if it is during normal work hours.

          • http://onhealthtech.blogspot.com Margalit Gur-Arie

            Just thinking out loud here…. but could there be a different set of directives required upon entrance into a nursing home, such as call PCP first (with proper caveats)? It won’t solve everything, but it might cut down on some suffering and expense. Maybe this should also be a quality measure….

          • http://www.facebook.com/people/Steven-Reznick/100000549195050 Steven Reznick

            It makes common sense and financial sense in the big picture but based on liability issues and other staffing issues I expect patients will be sent to the ER first because it is the path of least resistance for the one nurse covering forty patients. What makes you think we don’t already request that we be called first?

          • http://onhealthtech.blogspot.com Margalit Gur-Arie

             I am sure you request it, but requesting does not provide legal cover to the nursing home. If there was a directive on file, signed by the patient or authorized family member, it would probably be observed more often than just a request.

      • http://twitter.com/murzee Marya Zilberberg

        Alas, this scenario is all too familiar. Yet there is plenty of evidence that this is not the best choice for the patient — see a lot of the excellent work by Joan Teno and Susan Mitchell and their groups. 

  • Anonymous

    Medicare is not solvent.  Do you want to pay more money, ration care or stiff the doctors?

  • Anonymous

    When you are 95 years old, putting a bandaid on a slight finger cut could be considered prolonging life.  Let a 95-year old die from a UTI?  Perhaps you are comfortable with that, but I am not. 

    Much of the sudden-onset dimentia my physician husband sees in the nursing home is the direct result of UTIs. In addition, the elderly often don’t have high white counts or fevers with infection — until you begin treating the infection. And  yes, the problem is that the treating physician isn’t informed that the patient has a 102 degree fever until it becomes 106, and even then, no one can get the antibiotics into the patient until two hours later.

    Be honest.  The real problem is that no one can predict the resiliance of the human body, but it takes a treating physician in close communication with family members to make the kinds of decisions policymakers would like to limit to a formula. And a health care system that gets the physician notified appropriately.

    Using liability as an excuse to not do what should be done and then punish the patient for what isn’t done — even it it kills the patient –  is drachonian.

    • http://twitter.com/murzee Marya Zilberberg

      This story by Lisa Krieger in Mercury News conveys the message a lot better than I ever could
      http://www.mercurynews.com/cost-of-dying/ci_19898736

    • http://profile.yahoo.com/XJALXLDUQUPIOP4JJ7JWACJRC4 Missy

      Putting a band-aid on a finger cut is NEVER considered prolonging life.  The medical condition of the 95 year old prior to the UTI should be considered.  Hospice care covers antibiotics, including IV antibiotics, for terminal patients with infections.  However, hospice benefits do not cover intensive care.  If the 95 year old is basically healthy enough to survive the UTI after intensive care and go on to live a quality life, than it should be offered.  But the 95 year old mentioned in this example was a nursing home patient with advanced dementia.  The dementia was advanced prior to the UTI, not a symptom of the UTI.  Antibiotics in this case would be fine, but intensive care would be ridiculous.

      • Anonymous

        Missy, precisely my point.  There are two issues here.  Your point is that the question needs to be asked if the patient
        healthy before the onset of the UTI. True, or course.  But the second half
        of the problem is that the elderly often do not show symptoms of an
        illness as simple as a UTI, and standard indicators such as white count
        or fever often don’t show up either.

        There may be sudden on-set dimentia or a number of other behaviors often not recognized as related to an illness which isn’t showing up by the standard measures. The signal could be as simple as an elderly patient pinching the nurse when everyone knows this isn’t normal behavior.

        The lesson here is that a caretaker needs to know the patient to recognize that the patient is actually ill, possibly very ill, but ill with a treatable disease. Instead, our health care system has created a machine in which someone distanced from the situation makes up a set of rules to fund this but not that, with little regard for how people really live or die. 

        Rattling the change in the piggy bank doesn’t solve the problem.

        Life, old or young, is just not that simple.