Every American deserves the right to have a death with dignity

My old Canadian friend toxicologist Cliff Walberg was right when he famously said, “there is absolutely no limit to how revolting things can be.”

Remember that. It comes in handy, in addition to strong swear words, when stuff happens.

Case in point: I believe that every American deserves the right to choose to have a death with dignity and as pain-free as medical science and practice can provide.

To achieve that, patients and physicians must discuss the options for managing an upcoming death.

Some patients may wish to involve family members and/or a religious representative as well.

Many patients and physicians now have this timely discussion, but despite many years of medical journals publishing and medical organizations teaching about “advance directives,” “durable powers of attorney,” and the like, actually having the conversation, and acting effectively on the results, remains a minority event.

Most Americans who die are old, and thus Medicare beneficiaries.

Physicians who provide an important medical service deserve to be paid for such. Okay.

But what happens when that was proposed? In roared opportunistic politicians using highly effective metaphorical rhetoric. Death panels, pulling the plug on Granny, and the like.

Demagoguery ran rampant, exciting paranoia about government amongst not only the public but some physicians. The administration and Congress caved.

Then, glory be, the regulators put back the language, so physicians treating Medicare patients could get paid for such essential, humane, voluntary, end-of-life counseling beginning Jan 1, 2011.

At writing time, 79% of more than 1,800 MedPage Today survey participants responded in favor of Medicare reimbursing physicians for voluntary end-of-life counseling.

Then, in the first week of 2011, the uproar started again. Only days later, the administration caved again to ill-advised political pressure, rather than doing the obviously right thing.

When will we as a country be mature enough to have this conversation openly, even as adults?

Maybe soon?

HHS confirmed that the proposed regulation had not gone through the customary comment period. Oh. Now it can.

Let’s us continue having that discussion, on these pages.

Maybe the country will grow up, little by little, participate and follow.

George Lundberg is a MedPage Today Editor-at-Large and former editor of the Journal of the American Medical Association.

Originally published in MedPage Today. Visit MedPageToday.com for more health policy news.

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  • Mary

    This is absolutely right on. American culture and discussing death is the most taboo subject. Only by changing that culture can we start to see death as a part of life and something to be planned for like everything else that’s expected in life. In fact it’s really the only certain thing.

  • http://thehappyhospitalist.blogspot.com The Happy Hospitalist

    I know it’s just word play, but I thought I should just clarify something. I would much prefer to have dying with dignity than a death with dignity.

  • kullervo

    As a friend of someone who died of cancer and child of someone with advanced cancer, I wonder if there is a disconnect between what the doctor may be thinking about a patient’s prognosis and what the patient thinks about their future. I know nobody can see the future, but when my friend’s doctor finally told her she might consider calling hospice she weighed seventy pounds and was confused from the brain mets. She died two days later.

  • Beatrice

    Even with advanced directives, some physicians ignore them. Their function, as they see it, is to save lives, not end them. Isn’t that what the hypocratic oath says: “First, do no harm.” ? One can understand the need to remove death and dying out of the realm of subjectivity, into the cleaner space of objectivity.

    Palliative care MD’s promise a death without pain. And while that is and would be a welcome relief…a way to reduce the fear of pain..still more is needed.

    Watching someone starve to death, or struggle for breath, or be health in a drug enduced semi-coma, falls, in my mind, way short of dignity.

    For cerain, this conversation, needs to identify its terms, define paramaters and reach for some resolution…that keeps the decision as close to the sufferer as possible. There is no dignity in suffering. For whom is the morality question focused? Where is the humanity?

  • http://www.endoflifeblog.com Jim deMaine, MD

    Agree that there is wide and inappropriate variation in end of life care. Both physicians and patients lack education in this area. One physician noted that “dying without hospice is like having surgery without anesthesia.” I somewhat sarcastically comment on this issue in my blog entry titled “Don’t Ask, Don’t Die Health Care Ruling.” See – http://www.endoflifeblog.com/2011/01/dont-ask-dont-die-health-ruling.html

  • G Sormend, MD

    “You have rights without responsibilities”. This sounds as much demagoguery as ‘death panels’:

    Come on, let’s hear what the citizens’ responsibilities are. Who funds Medicare, for the terminal health care of others? It used to be said that ‘a peaceful old age is the result of a well-spent youth’. Medicare, together with the DOD, are the two albatrosses of our budget.

    Disclaimer: I provide palliative care. I am not a Republican. I am not a Democrat. I am not a libertarian. I believe we need more outcomes and less ideology.

  • http://drpullen.com medical blog

    Having the discussion of end of life issues is not going to happen because of paltry Medicare compensation. It will happen when physicians are comfortable with the topic, and when Americans are ready to have the discussion.

    • G Sormend, MD

      I am not sure what you are expecting to change a country’s/people’s culture and views of end of life medicine (?counseling / media), but I assure you that there is excellent data that redirecting funding certainly does change practice – witness ADT and prostate cancer. I am not proposing increasing compensation for terminal health care (even though I am such a provider) – far from it. I am merely indicating that my view that an article outlining rights without being clear about responsibilities is as much demagoguery as fear propaganda (death panels). With all this creeping demand, someone needs to pay for Medicare, and the sooner it is clarified to the public that the expansion of Medicare is unsustainable for the American economy, the better.

  • http://www.littlepatientbigdoctor.com Haleh Rabizadeh Resnick

    I don’t think anyone has a problem having these very important conversations. Patients need it. The problem is when it is tied to the package of compensation for the hospital/doctor, you know the counseling will be influenced by financial considerations on the doctor/hospital’s end- Not nice.

    Realistically, perhaps this is always the case on personal individual cases but to place the stamp of approval on it from a societal level is when the problem begins.

  • Dorothy Green

    Physicans cannot reverse our culture of overeating by counseling whether it is paid for not – this website has discussed this over and over again. We need a dramatic change in our eating culture, as we had with tobacco to change this culture and I say it needs to be done dramatically and soon before we go broke.

    I think the same applies to end-of-life-discussions. This is also a cultural issue and an expensive one when it comes to Medicare.

    Physicians would benefit greatly if the basic decision was made long before the end-of-life was near and he or she became involved with this patient or this patient’s end of life issue. Everyone would benefit.

    The more it is discussed in groups, families; the more places that provide advanced directives (this is kindof misleading wording), like libraries, on line, free DVDs etc, the more people will get involved. This is what needs to be encouraged.

    And of course, lawyers want a piece of this pie. The choices are not that complicated yet each state seems to want their own directive, number of witnesses and or notary, will or won’t support this or that directive. And it rarely ends up where it is useful unless one has it tatooed on their chest.

    I went to a resentation for seniors about it, not a workshop but rather a 2 hour legalese 40 page slide presentation by a lawyer.

    I also had the opportunity to work in a Hospice that really was one. Not one in which the decision was made a day or two before death to determine that Hospice was indicated but one that was part of the community. The entire medical community in this county was well informed because it was’t a market driven thing – it was the only one and got this way because it was (hope still is) engrained in the community, physicians, hospitals minds. Nurses attended 60% of the deaths in the county (meaning most patients did die at home with Hospice).

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