End of Life

The POLST form: You could be signing your life away

The Physician Orders for Life-Sustaining Treatment (POLST) form is fast becoming a standard document in the health care industry. When signed by a designated health care professional, it dictates whether to withhold or administer certain forms of medical treatment and/or care. POLST are known by different acronyms in various states (e.g., MOST, MOLST, POST, COLST).

A brightly colored sheet that’s very visible in a patient’s medical chart, the POLST form has boxes to check off to indicate whether a patient does or doesn’t want cardiopulmonary resuscitation (CPR), antibiotics, nutrition and hydration, mechanical ventilation, etc. And just as the names of these forms vary from state to state, the treatment options offered also vary. Trained “facilitators”—often not physicians—discuss treatment options with patients. After filling out the form with a patient, the facilitator presents it for signature by a designated health care professional—someone who may never have even seen or talked with the patient.

The completed POLST form isn’t simply an expression of a patient’s treatment preferences; it’s a set of medical ordersto be followed immediately or sometime in the future. These orders travel with the patient from one health care setting to the next, including the patient’s home, where they are to be followed by emergency medical technicians responding to a medical emergency. The first order in many POLST-type forms is this (or something similar): “FIRST follow these orders, THEN contact physician, advanced practice nurse (APN), or physician assistant (PA) for further orders if indicated” (emphasis in original).1

The POLST form is tilted toward non-treatment and can encourage premature withdrawal of treatment from patients for whom—but for the denial of treatment—death is not imminent. Facilitators present various options for treatment or non-treatment as if they’re morally neutral, even though certain ones may lead to euthanasia by omission.Compassion & Choices and Death with Dignity National Center, the assisted suicide movement’s leading organizations, are among the POLST form’s most ardent promoters. This is a big red flag signaling that it’s being promoted to facilitate “stealth euthanasia” (euthanasia disguised to look like a natural death).2

Legislative threats

Of special concern are legislators’ attempts to authorize the Department of Health and Human Services to establish regulations for the POLST form, which would essentially enshrine it in federal law. The Care Planning Act of 2013 (S-1439), introduced by Senator Mark Warner (D-VA) on August 1, 2013, and the Personalize Your Care Act (HR 1173), introduced by Representative Earl Blumenauer (D-OR) on March 14, 2013, would both accomplish this. These bills stalled in subcommittees, but their sponsors are known for their persistence.

HR 1173 is described as a bill to “amend the Social Security Act to provide for coverage of voluntary advance care planning consultation under Medicare and Medicaid, and for other purposes.” This bill resurrects Blumenauer’s 2009 proposal (dubbed the “death panels” bill by opponents), but with a twist: Section 3(a) of HR 1173 includes funding for promoting the POLST form nationwide.

Section 1(b)(11) declares, “A decade of research has demonstrated that physician orders for life-sustaining treatment effectively convey patient preferences and guide medical personnel toward medical treatment aligned with patient wishes.” But evidence refutes that claim. Consider the following:

1) Due to the bias against life-sustaining treatments in POLST-friendly literature, use of the POLST form doesn’t foster truly informed consent, as the below-mentioned incidents reveal. Informed consent requires that the patient also be told the possible benefits of treatment, such as recovery.3

California Advocates for Nursing Home Reform (CANHR), a nonprofit advocacy group, conducted a survey of long-term care ombudsmen in California. The resulting report states, “Many times, POLST forms will be accompanied by handouts meant to sway patient decisions. For example, on the POLST form, CPR is an available option. However, accompanying handouts describe how survivors of CPR may have broken ribs and brain damage and that those revived may only survive a short period of time afterwards. The handouts are clearly intended to convince patients or their representatives to forego CPR.”4

Respecting Choices (an advance care planning program offered by the Gundersen Medical Foundation) trains POLST facilitators and distributes a “fact sheet” assuring its readers, “When food and water are not given, you will die naturally from your chronic illness. You will not feel hungry, and you will receive good care to make you comfortable.”  The truth is that starvation and dehydration can be a very painful way to die. When tube feeding is withheld, patients are sometimes sedated to unconsciousness in order to make them “comfortable.”5

2) CANHR also reported that 59 percent of surveyed ombudsmen found that POLST forms were “often” or “sometimes” signed by third parties, even when the nursing home resident had the capacity to make health care decisions.6 And medical audits of nursing homes revealed blank POLST forms pre-signed by physicians in the charts of neglected patients.7 Some state POLST forms don’t require witnesses, or even the patient’s or agent’s signature (e.g., Wisconsin and Oregon). So, how can we be certain that this form reflects the patient’s own treatment preferences, rather than someone else’s choices?

3) The National POLST Paradigm website (POLST.org, “What is POLST?”) states, “The POLST form is for seriously ill patients for whom their physicians would not be surprised if they died in the next year, not for all patients.” Nevertheless, some states have vastly expanded POLST’s reach.

For example, Nevada’s POLST statute mandates that doctors must offer POLST to everyone thought to have less than five years to live and everyone diagnosed with a terminal illness, regardless of how many more years the latter are expected to live.8 New Jersey’s POLST law recommends use of the form for patients with a life expectancy of less than five years.9 Many long-term care facilities in Oregon offer the POLST to all residents.10

Predicting what one will want or need in the future—even “within the next year”—is guesswork. Informed consentrequires that each health care decision be made in the context of a patient’s present situation, and be based on truthful and complete medical information presented in a way that patients, their agents, and their families can understand.11 The POLST form does not ensure truly informed consent.

4) Sec. 1(b)(6) of HR 1173 claims that POLST forms “complement advance directives.” And POLST.org (“What is POLST?”) claims, “POLST is not an advance directive. POLST does not substitute for naming a health care agent.” But in real life, POLST forms may override wishes expressed by patients in their advance directives and cut their agents out of the decision-making process. If a POLST form and an advance directive conflict, the POLST form is often the controlling document, even when the patient or agent didn’t sign the POLST form—and regardless of state law.12

On March 13, 2014, I spoke by phone with Christine Harlander, RN, co-chair of the Iowa POST (Physician Orders for Scope of Treatment) Pilot Project. I asked, “The Iowa law states that a POST ‘shall not supersede’ an advance directive. In actual practice, does POST override an advance directive?” She responded, “No. The two work together.” When asked why a POST form is needed, she said, “The advance directive is rarely available in an emergency.”

One obvious question is, if a patient’s advance directive were attached to the POST form, wouldn’t it be as readily available as the POST in an emergency?

The bottom line

The POLST form is not about ensuring that patients’ medical treatment preferences are known and honored. That can be accomplished by encouraging the use of an advance directive called a durable power of attorney for health care to appoint a trusted person to make medical decisions for a patient who becomes incapable of voicing his own wishes. Moreover, if one wants full treatment, filling out a POLST form is unnecessary, since a typical POLST form states, “Any section not completed implies full treatment for that section.”

The POLST form is a vehicle used to manipulate patients to refuse treatment they may need in the future. The Catholic bishops of Wisconsin hit the nail on the head when they stated, “Due to the serious and real threats to the dignity of human life that POLST and all similar documents present, we encourage all Catholics to avoid using all such documents, programs, and materials.”13 The POLST form poses grave risks to vulnerable patients. That’s why it must be opposed.

How to push back

Find out if the POLST form is being implemented in your state and locality. Visit the POLST website (POLST.org; click on “Programs in Your State,” and follow the links to state and local programs) or call the National POLST Office (503-494-3965) to find the contacts for your state. Give them a call, and show interest and curiosity. The POLST promoters in each state are generally sincerely concerned about protecting patients’ rights and eager to share information about POLST, but are often naïve about its dangers. Once you know what’s happening, form a local “anti-POLST” coalition.

Refuse to fill out a POLST form. No matter how many times you’re approached by POLST facilitators, firmly state, “I have a durable power of attorney for health care that will go into effect if ever I need my agent to make decisions for me. Until such time, I want to discuss my current and future medical conditions, and applicable treatment and care options, with my attending physician and no one else. Please respect my wishes.”

Finally, if a health care provider insists that you must fill out a POLST form, be aware that there is currently no federal law regulating POLST and the National POLST Paradigm Task Force (see POLST.org, “FAQ”) states, “Remember, the use of a POLST form is always voluntary [emphasis in original]. No state can require that you have a POLST form.” Inform the provider of this fact. You can also contact your state’s POLST coordinator(s), who should confirm that a POLST form is always voluntary, and ask them to contact the provider and set it straight.

American Life League offers a Loving Will packet, which includes a life-protective advance directive accompanied by a durable power of attorney for health care form.There is no charge for the packet, but a donation of $9.95 for shipping and handling is appreciated. Call 888-546-2580 to order. 

Principles for making moral medical decisions

By Julie Grimstad

1. No matter what life-sustaining procedure or medical treatment is in question, when in doubt, err on the side of life. You can always try an intervention with the option of stopping it if it proves ineffective or excessively burdensome for the patient.

2. It’s the physician’s obligation to truthfully and fully—in layperson’s terms—discuss with the patient/agent/family/guardian the benefits, risks, costs, etc., of all available medical means that may improve the patient’s condition or prolong life. The focus should be on what the person making medical decisions needs to know in order to give truly informed consent.

3. The patient/agent decides whether or not a particular treatment is too burdensome. If the patient wishes to fight for every last moment of life, it’s his right to receive or continue treatment and care that might extend life.

4. It’s impossible to make morally sound, sensible, and informed health care decisions based on guesswork about treatment options for a possible future illness or injury. Health care decisions must be based on current information.

5. Two extremes are to be avoided: insistence on useless or excessively burdensome treatment, even when a patient may legitimately wish to forego it, and withdrawal or withholding of treatment with the intention to hasten or cause death.

6. The objective and motive for administering pain medication must be to relieve pain; death must not be sought or intended.

7. Nutrition and hydration, whether provided by spoon feeding or through a tube, is basic care, not medical treatment. Insertion or surgical implantation of a feeding tube requires medical expertise, but it’s an ordinary life-preserving procedure for a patient who has a working digestive system, but is unable to eat by mouth. Circumstances and intent determine the morality of withholding food and fluids.

• Acceptable: During the natural dying process, when a person’s organs are shutting down so that the body is no longer able to assimilate food and water, or when their administration causes serious complications, stopping tube feeding or spoon feeding is both medically and morally appropriate. In these circumstances, the cause of death is the person’s disease or injury, not deliberate starvation and dehydration.

• Unacceptable: When someone is not dying—or not dying quickly enough to suit someone—food and fluids are often withheld in order to cause or hasten death, because this person is viewed as having an unacceptably low quality of life and/or imposing burdens on others.

1. You can view the Colorado Medical Orders for Scope of Treatment (MOST) form here.

2. Ralph A. Capone, MD, et al., “The Rise of Stealth Euthanasia,” Ethics & Medics 38, no. 6 (June 2013).

3. According to a recent study, nearly 60 percent of elderly survivors who were resuscitated after cardiac arrest in the hospital were alive one year later (Paul S. Chan, MD, et al., “Long-Term Outcomes in Elderly Survivors in In-Hospital Cardiac Arrest,” The New England Journal of Medicine, Mar. 14, 2013). Dr. Chan said, “We shouldn’t hold a nihilistic attitude toward resuscitating the elderly, given these results”; see Judith Graham, “New Data to Consider in D.N.R. Decisions,” The New Old Age: Caring and Coping (blog), The New York Times, Mar. 14, 2013.

4. Physician Orders for Life-Sustaining Treatment (“POLST”): Problems and Recommendations, California Advocates for Nursing Home Reform, 2010, 5.

5. Tube Feeding: What You Should Know (originally published by Respecting Choices in 2011 and reproduced with permission), Hospice of Cincinnati.

6. Physician Orders for Life-Sustaining Treatment (“POLST”): Problems and Recommendations, 6.

7. Kathryn Locatell, MD, Physician’s Report—Operation Guardians: Golden Cross Health Care, California Advocates for Nursing Home Reform, Feb. 2012. (Operation Guardians is a project of the California Department of Justice, from which CANHR obtained this report.)

8. “Nevada’s new POLST statute: One more step down the slippery slope,” POLST: Critical Analysis and Comment(blog), Aug. 5, 2013. —Editor

9. “New Jersey’s new POLST law and the risk of unintended death,” ibid., Jul. 15, 2013. —Editor

10. “The Oregon POLST registry: Why so many full code forms?” ibid., Jan. 20, 2014. —Editor

11. “Agent” means a legally recognized health care decision maker appointed by a patient through an advance health care directive.

12. Christian Brugger, PhD., et al, “The POLST paradigm and form: Facts and analysis,” The Linacre Quarterly 80, no. 2 (2013), 103−138 (citation at p. 120).

13. Upholding the Dignity of Human Life: A Pastoral Statement on Physician Orders for Life-Sustaining Treatment from the Catholic Bishops of Wisconsin, Wisconsin Catholic Conference, July 2012.

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About the author

Julie Grimstad

Julie Grimstad serves as president of the Healthcare Advocacy and Leadership Organization. A nationally known speaker and writer, she addresses many aspects of medical decision-making and patient advocacy. She has served as a volunteer patient advocate since 1985.