Bright Pink Forms Are Not Enough

Dystopian literature and films have experienced a renaissance in America. In Lois Lowry’s critically acclaimed The Giver, elderly and other citizens are “released” from life when the government no longer deems them useful.[1] While it is implausible that the U.S. government will begin euthanizing elderly, sick, or disabled Americans, policy makers are grappling with how to allocate life-preserving healthcare resources to members of our rapidly expanding elderly population.

In 2016, Medicare will begin reimbursing medical providers for end-of-life counseling, ostensibly to ensure that a patient’s wishes regarding treatment are known and followed. Given that most states have or are developing POLST programs,[2] Medicare end-of-life counseling will often include the opportunity to complete a POLST form with the assistance of a medical provider.[3]

In her article, “Physical Death Is Certain and Permanent: A Review of the POLST Paradigm,” Anderson-Shaw argues that we must be good stewards of healthcare resources and defends the use of advance planning. While Anderson-Shaw addresses some objections to advance planning, she does not focus on a primary concern with the POLST paradigm specifically—that patients will be pressured or even coerced to reject basic life-sustaining care as a cost-containment measure.

Anderson-Shaw states that using “all of our medical resources to stave off biological death when death is imminent” is not good stewardship of those resources.[4] This sounds unassailable; however, POLST forms are not intended for use only when death is “imminent,”[5] and they do not simply designate whether to use or not use extraordinary treatment.

For example, a patient can reject the provision of medically administered nutrition on his POLST form. However, by prematurely making this decision, the patient may forfeit access to quality palliative care that could give him more time. Feeding and hydration do not treat a disease; rather, they meet a basic human need. Without nutrition, a person will die in a short period of time regardless of his or her medical prognosis. In contrast, as Anderson-Shaw mentions, “palliative care and hospice services . . . may actually improve quality of life as well as extend life in many cases.”[6] A patient who rejects nutrition on a POLST form may not have the capability to communicate a desire to try palliative care when a life-threatening medical emergency arises.

Anderson-Shaw maintains that physicians and providers are obligated to begin conversations about end-of-life care with individuals facing “serious illness that may eventually contribute to death,”[7] and that these conversations should not be “disparaged as a form of ‘death panel’ conspiracy.”[8]

While individuals facing difficult prognoses can benefit from conversations with trusted healthcare providers about end-of-life care, the tone and timing of the conversations can have a life-limiting impact. Patients who are encouraged to complete POLST forms are suffering from terminal or chronic illness or disability. They are making major, life-altering decisions at a time when they are vulnerable and even afraid. As a result, a healthcare provider’s assistance in completing a POLST form may have an undue influence over the patient’s treatment choices. What’s more, the POLST form is then executed as a medical order, available to all of the patient’s healthcare providers and even first responders, magnifying the potential impact of the healthcare provider’s influence on the patient’s decisions.

Anderson-Shaw acknowledges that criticisms of POLST are not aimed at all end-of-life discussions or advance planning, but rather reflect a concern that “POLST is simply not specific enough for real-time clinical situations, and there is a fear that the form presents a bias toward non-treatment.”[9] This concern is warranted; further, the widespread use of POLST forms may increasingly be viewed as a legitimate or even expected cost-containment measure. Patients may be pressured into making decisions about end-of-life care based on financial concerns, personal or societal. Further, physicians may feel pressure to make life-limiting recommendations to patients in order to ensure reimbursement from third-party payers.[10]

POLST may also be harmful to persons with disabilities not at the end of life. A task force in Oregon has noted that persons with significant disabilities, developmental disabilities, and/or significant mental health conditions “have been subject to biases resulting in under-treatment and/or had their chronic health conditions mistaken as an illness [sic] nearing the end of life.”[11]

Advance planning, when done voluntarily and with appropriate safeguards (e.g., appointing a durable power of attorney rather than relying upon a written document alone), can be helpful and life-affirming. A patient’s loved one who has been informed about her wishes regarding end-of-life treatment, with the aid of a trusted medical professional, can examine all of the facts—many of which cannot be represented on a bright pink form—and can make the best decision for the patient.

References

[1] Lois Lowry, The Giver (New York: Houghton Mifflin Co., 1993).

[2] Lisa Anderson-Shaw, “Physical Death Is Certain and Permanent: A Review of the POLST Paradigm,” Examining POLST, supplement, Dignitas 22, no. 4 (Winter 2015): S12.

[3] Created first in Oregon in 1991, the “Physician Orders for Life-Sustaining Treatment” (POLST) form was designed “to convert patient preferences for life-sustaining treatments into immediately actionable medical orders” using a “standardized, brightly colored form that provides specific treatment orders for cardiopulmonary resuscitation, medical interventions, artificial nutrition, and antibiotics.” Susan E. Hickman et al., “The POLST (Physician Orders for Life-Sustaining Treatment) Paradigm to Improve End-of-life Care: Potential State Legal Barriers to Implementation,” Journal of Law, Medicine, & Ethics 36, no. 1 (2008):119.

[4] Anderson-Shaw, “Physical Death Is Certain and Permanent,” S10.

[5] See, POLST, “About the National POLST Paradigm,” http://www.polst.org/about-the-national-polst-paradigm/ (accessed December 4, 2015): “Only patients with serious illness or frailty, for whom a health care professional would not be surprised if they died within one year, should have a POLST form.”

[6] Anderson-Shaw, “Physical Death Is Certain and Permanent,” S14.

[7] Ibid., S10.

[8] Ibid., S11.

[9] Ibid., S13.

[10] Ibid., S15.

[11] See Oregon POLST Task Force, “Physician Orders for Life-Sustaining Treatment (POLST) Use for Persons with Significant Physical Disabilities, Developmental Disabilities and/or Significant Mental Health Condition who are Now Near the End of Life,” http://www.polst.org/wp-ontent/uploads/2013/03/POLSTPersonswithDisabilitiesLongDocument.Final_.pdf (accessed December 4, 2015).