Thursday, August 13, 2009

You and the New Advanced Care Planning Industry

by Barbara Sowell

What is Our Likely Advanced Care Planning Future?

By now most of America’s boomers are well aware of the ObamaCare bill, HR 3200, "The Affordable Healthcare Choices Act of 2009,” which, if passed into law, will require all people enrolled in Medicare to have a counseling session with an Advance Care Planning Consultant every five years. The bill will amend Section 1861 of the Social Security Act (42 U.S.C. 1395x) to include Advanced Care Planning (see pp. 425-430 of HR 3200).

Of course, the Democratic proponents of this bill have been quick point out that there is no “mandatory” language in this deliberately vague bill, but when Republicans in Congress asked for the addition of the word “voluntary” to be added, the Democratic majority refused. One can only make the assumption that the Democrats would like a “mandatory” option “just in case” one day it is needed. Thus, Americans are right to be concerned and are right to make the assumption that eventually Advance Care Planning will become mandatory. This will most likely come about after the bill has passed into law and rules and regulations are implemented.

As a retired social worker, who is well versed in the convolutions of state bureaucracy, I thought I’d take a look at the current Advanced Care Planning industry and make a few predictions. After all, the best indicator of future outcomes is past behavior.

First, let me go on record here. I believe that Advanced Care Planning (insuring our right to accept or to reject life-sustaining treatment and care at the end of life) is a personal choice that should be pursued by intelligent adults who don’t want to leave these decisions in the hands of strangers.

Unfortunately, when anything becomes mandatory that, by definition, implies that someone else will have a higher level of authority over our individual plans. “Mandatory” also implies that failure to comply will result in some penalty, or loss of benefit.

Today, much of the research into Advanced Care Planning is being conducted by the Agency for Healthcare Research and Quality (AHRQ), which is part of the U.S. Department of Health and Human Services.

The AHRQ points out that the right to accept or refuse treatment is guaranteed by the Patient Self-Determination Act, which “guarantees patients the right to accept or refuse treatment and to complete advance medical directives.2-12 However, despite patients' rights to determine their future care, AHRQ research reveals that:”

AHRQ research shows that care at the end of life sometimes appears to be inconsistent with the patients' preferences to forgo life-sustaining treatment and patients may receive care they do not want.5 For example, one study found that patient preferences to decline cardiopulmonary resuscitation (CPR) were not translated into do-not-resuscitate (DNR) orders.5,6,11 DNR orders are requests from the patient or the patient's surrogate to the physician that certain forms of treatment or diagnostic testing not be performed.18 CPR is a procedure frequently addressed in DNR orders. Another study found that patients received life-sustaining treatment at the same rate regardless of their desire to limit treatment.18

There is no doubt that the Patient Self-Determination Act (PSDA), which became law in 1991, has been a dismal failure when it comes to insuring that a patient’s last wishes are followed. No doubt this is why Advanced Care Planning has been made a part of the current bill in Congress.

Unfortunately, the Patient Self-Determination Act is a one-way law that was designed at a time when our Nation’s greatest fears had to do with an abundance of medical interventions that might be employed to prolong life against our personal wishes. Today, the strong possibility of eventual health care rationing leaves seniors with little protection when it comes to the desire to obtain medical or surgical treatment that might be denied due to advanced age or other conditions. This bill does allow for an order regarding life sustaining treatment, but that would most likely be subject to other conditions and myriad rules and regulations that have yet to be written.

Here are the protections in the 1991 Patient Self-Determination Act (PSDA)

On November 5, 1990, Congress passed this measure as an amendment to the Omnibus Budget Reconciliation Act of 1990. It became effective on December 1, 1991. The PSDA requires many Medicare and Medicaid providers (hospitals, nursing homes, hospice programs, home health agencies, and HMO’s) to give adult individuals, at the time of inpatient admission or enrollment, certain information about their rights under state laws governing advance directives, including: (1) the right to participate in and direct their own health care decisions; (2) the right to accept or refuse medical or surgical treatment; (3) the right to prepare an advance directive; (4) information on the provider’s policies that govern the utilization of these rights. The act also prohibits institutions from discriminating against a patient who does not have an advance directive. The PSDA further requires institutions to document patient information and provide ongoing community education on advance directives.

So who will provide our Advanced Care Planning?

Obviously, we need the advice of lawyers to prepare advance directives, durable and medical powers of attorney, and other end of life documents, such as living wills etc. But lawyers can’t give medical advice.

Under this bill the Advanced Care Planning consultation must be with a “practitioner.” On p. 428, the “practitioner” is defined as a physician, nurse practitioner, or a physician’s assistant.

With the current U.S. population of residents over the age of 65 at around 13%, and a projected 65+ population over 25% in the next 40 years, those “practitioner” consultations every 5 years, or “more frequently,” will take a huge bite out of the entire health care budget!

By the time this bill has been translated into innumerable rules and regulations governed by numerous federal and state agencies, it is doubtful that the physician “practitioner” will have much direct patient contact but merely oversight, and the actual task of patient contact will fall to someone much lower on the pay scale.

The New Advanced Care Planning Industry:

A new industry is about to be launched and farsighted individuals and entrepreneurs have already put the wheels in motion.

Whenever a new industry emerges the first thing that usually happens is the development of a professional organization to help promote the industry. Eventually the organization develops guidelines for professional behavior, and that is usually followed by some form of organizational certification to solidify the organization’s power and clout, to insure a steady income stream from member professionals, and to develop a strong lobbying voice. The outflow from such types of certifications is the development of training organizations and or businesses designed to equip professionals with the ability to provide training and to create training materials. Once enough professionals become certified and the organization has a strong enough voice, state and federal licensing laws come about and the organization with the strongest voice has a great deal of say as to the structure of proposed bills.

Take a look at the American Association of Nurse Life Care Planners (AANLCPSM), an organization founded by Kelly Lance in 1994. RN’s can become certified as Life Care Planners through AANLCPSM.


The Certified Nurse Life Care Planner certification exam was first offered in 1999. Since 2003, the Certified Nurse Life Care Planner Certification Board (CNLCPCB) provides oversight of the certification exam for Nurse Life Care Planners. A passing score on the certification exam allows a Registered Nurse to utilize the designation of Certified Nurse Life Care Planner (CNLCP). The CNLCP credential is renewed every five years with sixty proven continuing education credits. The exam is specific to the field of nursing in that the nursing process, nursing diagnosis, anatomy and physiology as well as nursing care needs are incorporated into the exam questions.
Criteria for sitting for Nurse Life Care Planner certification exam includes:

1. Licensed Registered Nurse for at least five years.

2. RN license must be active without restrictions.

3. RN experience must include at least two years of full time or the equivalent (4,000 hours) of case management experience or the equivalent in nursing demonstrating experience in the continuum of care.

4. Five hundred hours of life care planning experience within two years of application OR a minimum of sixty continuing education units or its equivalent in contact hours specific to life care planning from a university or certificate course. Demonstrated experience in Medicare Set-Aside Allocations is eligible for a maximum of one hundred hours towards the five hundred hours of life care planning experience.

Effective 2008, candidates will be required to submit a sample life care plan for peer review or proof that completion of a life care plan occurred during an approved life care planning course.

Respecting Choices® is a 2-day POLST Paradigm Program that offers Advance Care Planning (ACP) Facilitator Course (with Instructor Certification)

And there are private companies popping up offering a way for you to make your own Advanced Care Plan. However, it might be wise to wait until it is determined what health care reforms actually become law, and exactly what Advanced Care Planning regulations will be implemented.

It is important to note that HR 3200 states with regard to Advanced Care planning that:

(IV) is guided by a coalition of stake holders includes representatives from emergency medical services, emergency department physicians or nurses, state long-term care association, state medical association, state surveyors, agency responsible for senior services, state department of health, state hospital association, home health association, state bar association, and state hospice association.

Obviously with this many public and private “stake holders,” do you really believe that Advanced Care Planning will be voluntary for long?


  1. Barb, this is such a great article. I've been quoting you all around and linked you today, and I think one other time.

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