A Woman's Perspective On The Times We Live In


September 26, 2014

You Better Know What "Palliative Care" Means!

     Get ready for the new buzz word in the world of Medicine and Health Insurance/Provider jargon ... "Palliative Care".  Do you know what it means?  I didn't, but figured it must be pretty important to be at the center of a new report on End-of-Life Care by a 21-member "non-partisan committee" appointed by the Institute of Medicine, which is the research arm of the National Academy of Sciences.
     I don't know about you, but I get a little nervous when any "committee" gets together to decide how I should be treated in the latter stages of my life --- especially a group that is supposed to be "nonpartisan" and is appointed to provide guidance and advice to policy-makers.  When the make-up of that committee overwhelmingly consists of professors from university medical schools ... well, let's just say I'm a little suspicious of recommendations coming from academia.  A little real-world experience with actual patients might give me a little more confidence in their opinions.
     Nevertheless, this distinguished group of professionals determined that "The country’s system for handling end-of-life care is largely broken and should be overhauled at almost every level."  That's a pretty bold statement with serious implications!Among their key findings and recommendations are the following points:
•  One out of every 4 Americans over the age of 65 dies in the emergency room or hospital, which results in a burden on hospital facilities and family budgets.
•  The elderly are living longer, often with lengthy illnesses that task family resources and demand excessive time delegated to caring for the patient.
•  Most people nearing the end of life are not physically, mentally, or cognitively able to make their own decisions about care. The majority of these patients will receive acute hospital care from physicians who do not know them. Therefore, advance care planning is essential to ensure that patients receive care reflecting their values, goals, and preferences.
•  Although professional guidelines and expert advice increasingly encourage oncologists, cardiologists, and other disease-oriented specialists to counsel patients about palliative care, wide-spread adoption of timely referral to palliative care appears slow.
•  Palliative care services, including hospice, improve patient outcomes and may reduce health care costs by lessening use of acute care services. Changes are needed throughout the health care system to incentivize provision of comprehensive palliative care.
•  Medical schools and groups that accredit and regulate health providers should greatly increase training in palliative care and set standards so that more clinicians know how to compassionately and effectively treat patients who want to be made comfortable but avoid extensive medical procedures.
•  Finally, there is a need for public education and conversations about death and dying.  Americans need to know what their choices are, and the value of Palliative Care.
     That's just a quick and incomplete summary of "the panel's" findings.  But, I'm sure you noticed that term "Palliative Care" sprinkled throughout their recommendations.  So, what is it?  The dictionary defines it as:  Specialized medical care for people with serious illnesses. It focuses on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.  A little more research into the exact meaning of "palliative", and you will find the sense of soothing or calming for the terminally ill.  A little bit deeper, and you will find these terms associated with Palliative Care:  painkiller, sedatives, tranquilizers, opiates.  It's one thing, to consider Hospice Care, when that is the decision of the patient and the family.  It's quite another to consider that Palliative Care is also recognized as a method of reducing the costs of health care.
     So, while I agree that too often, the elderly and terminally ill may be subjected to painful, long-term, and expensive care that does not yield a positive result; and that there are times they would actually choose to forego such treatment, it makes me just a little bit nervous that we now have a panel of "health experts" who are recommending that Palliative Care of the elderly be incorporated (and dare I say, mandated) into our health care system.
     Even the panel, itself, issued a veiled warning with this recommendation:  "Quality standards and measures are needed to ensure that changes in payment systems, particularly those occurring under the Patient Protection and Affordable Care Act, do not adversely affect quality of care for patients at the end of life."  Sounds like they might be just a tad concerned that Palliative Care could get out of hand and be misused in ObamaCare.    
     There is a fine line that needs to be walked here.  Would I rather die at home in my bed, surrounded by friends and family, instead of in a cold, hospital environment attached to tubes?  That's an easy answer.  Any policy that allows me to make that decision at the time it needs to be made is one that I could accept.  But to make the blanket statement, "Most people nearing the end of life are not physically, mentally, or cognitively able to make their own decisions about care", lends itself to suspicions that those decisions will be taken away from us and made by the oft-denied "death panel."
     And if I have this "Advanced Planning" discussion with my doctor, what are my options for changing or amending those decisions?  Or does that private conversation with my physician become part of my permanent medical records, which are shared with insurance providers and hospital staff, so that anytime I am admitted to the hospital, it becomes potential grounds for determining my medical care (or in this case, lack of life-saving care)?
     At what age does Palliative Care become mandatory?  If you read between the lines of these recommendations, you might become concerned about your twilight years.  We all know that our economy is suffering in many sectors, and with our aging population, the exorbitant costs of health care are coming under extreme scrutiny.  And it's not hard to get a little worried, when you read what The Blaze recently reported: "Dr. Ezekiel J. Emanuel, a former Obama administration health policy adviser and the brother of Chicago Mayor Rahm Emanuel, said in a recent op-ed that 75 is the ideal age to die, claiming that “living too long” can often lead to a “deprived” state — one that sometimes causes people to be remembered as “feeble, ineffectual, even pathetic.”
     The last thing I want is "policy advisors" like him to start determining when I might become a burden on society.  So, maybe I'm becoming a little too paranoid, but the way I see it is that how I live the end of my life should be a determination made by myself, my family, and my doctor.  When panels and policy wonks and insurance providers start laying out guidelines, how long before my voice is no longer heard?

Leviticus 19:32    "You shall stand up before the gray head and honor the face of an old man, and you shall fear your God: I am the Lord."

 

6 comments:

  1. Yep, it seems to follow the beliefs of Agenda 21, or the "self sustainability" program of the UN. When you are no longer "productive", not able to pay taxes, you become a "burden" to "society". In other words, you are "culled", as if you are a farm animal, which has turned from an asset to a liability, or expense. Take notice that the right to be born is also being controlled through free contraceptives, morning after pill, and abortions. Our global elite have appointed themselves god over life and death. I'm very much looking forward to Jesus returning.

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  2. I am a retired health care professional with 41 years experience working with the developmentally disabled and geriatric population, most of them not able to speak for themselves. We changed within recent years from offering hospice care to a transition beginning with palliative care which later evolved into hospice when required. It is a lengthy and complicated process to begin palliative care, but as it is still rather new, they are learning to deal with it more expeditiously. All of these people have legal guardians and family members that are involved in the process. The place that I was employed was a State facility. We had constant oversight from both State and Federal surveyors. Both palliative and hospice care are wonderful for the client when done
    by professionals who are experienced with the process. It can of course have the potential to be used inappropriately- as many things can.
    Each individual and their significant others need the freedom to make their own choice regarding the use of this process. My sister died on hospice at her own home, my father died on hospice in the oncology unit of the hospital- they worked hand-in-hand together beautifully for my father's passing. On another note, there is a misunderstood principle regarding dehydration during the hospice phase. My sister was an RN,
    and the choice of using hospice without hydration wad hers, because it is more comfortable for the patient. My Dad also had no hydration, as well as no nutrition.

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  3. Belle Ringer: I had a hard time with this blog's topic and content. As one who serves on the board of directors for a local hospice service AND is supporting efforts to provide palliative care service in my home town, I am distressed by some (but not all) of your declarations. I agree with the person's quote from above" Both palliative and hospice care are wonderful for the client when done by professionals who are experienced with the process. It can of course have the potential to be used inappropriately - as many things can. I am a firm believer that hospice AND palliative care play an important role in the delivery of healthcare in the USA.

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    1. I would ask you to please re-read my post … in no way do I disparage Hospice Care OR Palliative Care in general. They are valuable services, and ones I anticipate using in my own healthcare decisions. I am simply asking people to consider where our medical care may be headed as ObamaCare takes effect and these decisions are moved from individuals and families to government-directed regulations. As both previous comments noted, "they have the potential to be used inappropriately." That is simply the point I was trying to make (and perhaps did not do so adequately). "Palliative Care" is a term that could easily be manipulated through the mountainous language of a national healthcare system. What I want people to be aware of and to guard against are people like Dr. Emmanuel who would like to arbitrarily make those decisions for you.

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  4. I totally agree with your last bullet point towards the top where we need to be properly educated with palliative care. What kind of training is out there to better prepare yourself for palliative care and care giving in general? People should be able to know what their options are with the proper education I think. Especially in those situations where palliative care is needed!
    http://cshospice.org/

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  5. Thanks a lot now I know how to comment with a link and I can done my job... god bless you.

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