In the end, it is about Life

Posted by on Sep 18, 2014 in Community, End of Life | 5 comments

In the end, it is about Life

The Institute of Medicine of the National Academies has released their long anticipated 500-page report, titled Dying in America – Improving Quality and Honoring Individual Preferences near the End of Life.   This is a critical addition to the ongoing conversation about health care in the United States and makes observations and conclusions, which we need to consider and understand.   They conclude, as has been said before, that we waste precious resource’s as we fail to give good end-of-life care, millions suffer needlessly, and that we can and must do much better; it is time we opened ourselves to the conversation and our obligation to one another.

The report is a remarkable achievement which, like other IOM reports, will be sited during debates, research and planning. They note that with the aging of our population our reluctance to address final planning is a crisis, which affects in disproportionate numbers, not only the elderly, but also any group receiving marginal healthcare.  Paradoxically, in the most technologically advanced medical centers, the futile focus on treatment in terminal situations not only wastes dollars it wastes life and causes suffering.   As the result of “knowledge gaps, structural problems and financial disincentives,” our poor and painful approach to end-of-life care is perhaps the most perverse result of our fragmented health system.

IOM emphasizes education in end-of-life choices and planning, perhaps starting with organ donation on teenage driver licenses, and continuing through all healthcare contact during a person’s life. Patients and families need to be engaged and educated to discuss and plan long before they are consumed actually fighting disease or making wrenching last minute decisions.  To this end, American citizens, doctors and all health care providers need to learn the alternatives, treatment possibilities and confront the challenging topic of dying.  While the IOM was encouraged by the expansion of the medical specialty of Palliative Care, they note that there will always be too many people near the end of their lives to be cared for by just a few specialists, rather there is the need for all doctors who serve patients with life threatening disease to be skilled in giving quality end-of-life counseling and care.

The report focus on “person-centered, family oriented End-of-Life Care” is to be applauded.  Nonetheless, there will be those that will interpret the emphasis on “compassionate, affordable, sustainable” treatment as suggesting that the hidden agenda is to save dollars at the expense of lives.  Such an analysis would corrupt the truth and miss the critical goal of empowering each individual to make decisions regarding how they wish to live their lives and what quality means to each of us.  This is a matter of personal freedom; the opportunity and right to live, at every moment of life, as we desire, and to decide what medical care is right for each.  Ignorance and confusion about realities and limits, especially in those with terminal disease, combined with a national discomfort about discussing death, results in many Americans losing the opportunity to make vital personal choices.

The present reality is that excessive, invasive medical treatment is often given without patients and families having the educated possibility of living their final days, weeks or months in comfort, at home, with dignity, held by the ones they love, while other patients languish without any care, in pain, alone in the cold and dark.

The end-of-life is not about being dead.  It is a precious, irreplaceable, part of life. Our goal, our obligation, as a society and as individuals, must be to find peace, quality and love until our very end.

Perhaps, then, the title of this report should be: Honoring Life in America.

5 Comments

  1. Dr. Salwitz:
    In reading over the report brief it seems you have been preaching and practicing many of the recommendations they make for many years.

    While my wife’s dying this past Feb was, and is, difficult to deal with I know her last days at home were handled in a rational and caring way, thank you for the critical part you played.
    Me

  2. For my type of cancer, the ACS recommends bone tissue, and skin removal. This includes a series of surgery, prosthetics, and a long time in a nursing home for maybe 10 years of remission. This would have been on my face-nose-mouth. I got a nasty piece of work that wrote all over my chart that I was a non-compliant patient. he wouldn’t release me from his care-and I was locked into the clinic run by my HMO-medicare advantage plan. I have good doctors now-except for the PCP-I’m changing again.

    More than oncologists need to be dialed into this. I wish that the HMO would set up a hierarchy, where PCPs would be told to accept oncologist as the top of the pecking order or cardiologists.

    My issue is my weight and BMI. My oncologists like it-it’s stable. I’m generally healthy- I walk, am active-I’m 72.

    I’ had one PCP say that he didn’t treat cancer and wouldn’t run a strep test. The strep really ran me down, as it would do to any patient-cancer or not.

    The basic problem is that the HMO tried to force me into severe radical treatment that I didn’t want. They didn’t want to respect me and my goals of smiling, laughing, eating with my family. I take normal maintenance for a 72 year-old woman. Thyroid supplement, Zantac because of the stress caused by the PCPs, another stomach med, and a nose spray because my nose hasn’t quite recovered from surgery and radiation.

    I’ve been nagged and duking it out about my weight-the HMO forgot that I have incurable cancer. I do need my TSH monitored, refills for my meds, etc.

    I don’t understand why the HMO doesn’t want me to do what’s healthy for me, but was willing to pay for radical surgery, about a year in a nursing home with an exposed menges, physical and speech therapy, prosthetics, etc. It doesn’t compute.

    Maybe the fault of American medicine is the hero complex—superman to the rescue, save me from being run over by the steaming locomotive while tied down on the railroad tracks. It seems that many want to go to great lengths in fighting these wars, fighting death, but they don’t want to do the little things that actually give me life, like do a strep test or treat a dog bite.

    I’m on my feet, work in the yard, walk 100 lb coonhounds, eat and sleep well, don’t faint or fall down, etc. What’s wrong with that?

  3. Dr. Salwitz, you educate, inform and inspire. I share your wisdom with others. That’s the least I can do. Stay well.

  4. Marvelous, succinct and well-worded overview of this fraught topic. I particularly appreciated these phrases:
    “As the result of “knowledge gaps, structural problems and financial disincentives,” our poor and painful approach to end-of-life care is perhaps the most perverse result of our fragmented health system.”
    “Patients and families need to be engaged and educated to discuss and plan long before they are consumed actually fighting disease or making wrenching last minute decisions.”
    “Ignorance and confusion about realities and limits, especially in those with terminal disease,… “

    And thanks for the link to the report. I downloaded a copy.

  5. Meyati, I’ve seen your posts on several sites and while the wringer you’ve been put through is appalling, your rational, common-sense attitude is inspirational. My husband, after suffering a malpractice cascade that included two implantations of an unnecessary and life-threatening device then abandonment by the last Ologist responsible, is likewise taking the attitude of letting nature (or iatrogenesis) take its course if any further invasive procedures are involved. I’m still in my mid-40s and can only hope that when I’m your age, I will be as strong and sensible as you are!

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