Protecting Your Right to Live
Safeguarding Patient Autonomy in Medical Care

Family North Carolina Magazine—Jan/Feb 2008

by Annette Rhodes, Esq.

The North Carolina General Assembly recently amended several statutes having to do with patient autonomy and withdrawing or withholding medical care. This article will cover the current state of North Carolina law regarding what is called "end of life" medical care and outline some steps you might take to see that the medical care you want to receive will be given if you are gravely ill.

Advances in medical technology have made it possible to continue the lives of many people who ten years ago would have died from their illness or injury. These advances have increased the decisions a gravely ill person must make concerning their medical care and, very importantly, the decisions others may have to make for them if they are unable to make or communicate their wishes at the time a decision must be made.

The right to face death without medical intervention is recognized by the medical community as part of the right to "personal autonomy."1 The State of North Carolina calls it the right to a natural death and recognizes it as part of our public policy.2

Many people believe that God ordains and places a high value on life. Some believe it is wrong to refuse any medical intervention that may continue life. Others believe that a decision between medical treatment and death should be influenced by the "quality of life" a person may experience if care is provided and life continues. Both positions are based on an individual's personal values and priorities.

It is difficult for many people to define the quality of life they find less acceptable than a "natural" death except with ambiguous colloquial phrases such as, "If I'm not in my right mind" or "if I can't enjoy life" or "if I'm a vegetable." Even more difficult is fashioning, when you are well, specific instructions for when you are gravely ill concerning the withdrawal or withholding of life-sustaining measures-primarily because of the vast variety of medical conditions which can affect us and the continued advance of medical technology. State law allows legal instruments by which residents may express their wishes in these circumstances, but a person must understand how these instruments work in order to safeguard their rights as a patient.

Basic Legal Instruments
North Carolina law recognizes several legal vehicles through which a resident of the state may exercise some advance control of their medical care. One such vehicle is a written Advance Directive For A Natural Death (commonly called a "living will"). An advance directive attempts to give specific instructions concerning the withholding or withdrawal of medical interventions. The instructions can be mandatory or permissive. Another instrument is a written Health Care Power of Attorney (HCPOA), which is used to appoint another person, called a health care agent, to make medical decisions when the patient is unable and the agent's powers can be broad or limited.3 Neither instrument has effect as long as the patient is capable of communicating what they want, and both can be revoked by the patient. There are officially authorized forms for an advance directive and a HCPOA in the statutes, but the statutory forms are not required-allowing advance directives and HCPOAs which deviate from the statutory form to be valid, provided they meet certain minimum requirements. The statutory HCPOA form contains limited advance directive provisions but, as discussed below, a HCPOA with expanded advance directive provisions is probably the best instrument for most people.

It is very important to know that if a person has not given written advance directives and cannot make or communicate health care decisions, under certain circumstances, others are legally entitled to make medical decisions for them, including the withdrawal or withholding of what are called "artificial nutrition" (a feeding tube) and "artificial hydration" (non-oral fluids such as an I.V.).

Others Could Determine Your Quality of Life
You have only to recall the Terri Schiavo case in Florida,4 which received national media coverage, to get a sense of the issues surrounding others' determination of someone's quality of life. Under a Florida statute which allowed life-supporting measures to be withdrawn if a patient was "in a persistent vegetative state," her husband determined that Ms. Schiavo's quality of life was not worth sustaining and ordered her feeding tube withdrawn. Terri Schiavo, who was severely disabled, but not comatose,5 died 13 days later.6

Neither the manner in which Terri Schiavo died, nor the fact that someone other than herself decided that the quality of her life was not worth sustaining, is unusual.7 Since 1977, North Carolina has had a law allowing the withdrawal and withholding of medical intervention from a person who does not have an advance directive.8 Amended in 2007, that statute now provides that "life-prolonging measures" may be withheld from patients who lack the capacity to make or communicate health care decisions and are likely to never regain that capacity if they: (a) have "an incurable or irreversible condition that will result in the person's death within a relatively short period of time," or (b) are "unconscious and, to a high degree of medical certainty, will never regain consciousness."9

Life-prolonging measures are defined by the statute as medical procedures or interventions which would only serve to artificially postpone the moment of death by sustaining, restoring, or supplanting a vital function. They include, without limitation, mechanical ventilation, dialysis, antibiotics, artificial nutrition and artificial hydration. They do not include care necessary to provide comfort or to alleviate pain.10

The 2007 amendment also substituted the term "unconscious" for "persistent vegetative state." It remains to be seen whether "unconscious" is more precise than "persistent vegetative state." The term "unconscious" may also be susceptible to subjective definition, influenced by the quality of life values of the attending physician and other decision makers.

MOST
Even if you have an advance directive or a HCPOA with advance directive provisions, you may not be guaranteed the medical care you wish to receive if you are gravely ill. The changes made in 2007 by the General Assembly permit the use of what is called Medical Orders for Scope of Treatment, or "MOST."11 MOST is a form completed and signed by the physician and the patient or someone standing in for the patient, including a guardian, a health care agent, a spouse, parents, adult children, adult siblings, or even someone with an "established relationship with the patient" acting in good faith. It is a doctor's order concerning treatment for the patient, but it is more than a doctor's order. A doctor's order should be consistent with a valid advance directive. However, when a MOST is signed by the patient, it will suspend the patient's advance directive to the extent of any inconsistency. This is acceptable provided the patient is competent, understands that they are suspending part of their advance directive and has not been pressured to consent to the MOST. What is not clear in the statute and what would not be acceptable, is whether a MOST signed by someone other than the patient will override advance directives as well. If that were to be the case, a patient's decisions about life-sustaining medical care and quality of life values expressed in their advance directives could be disregarded.

Many of the people who were involved in developing the recent amendments to North Carolina's laws on withholding and withdrawing medical interventions were influenced by their experience with patients fearful of being over-treated-not being allowed to die a natural death. As a result, the statutes and, particularly, the statutory forms are inadequate to protect the rights of patients fearful of being under-treated-not being allowed to continue living-if their quality of life is deemed substandard in the eyes of someone else. Although the statute explicitly states that it does not authorize deliberate acts or omissions to end life other than to permit the natural process of dying, further protections from under-treatment are absent, and no statute requires medical personnel to treat a patient in accordance with their advance directive.12 Instead, the majority of the General Assembly appear to have assumed that the physician's Hippocratic oath or the common law would require life-sustaining medical interventions absent an exception in either the statutes or a patient's advance directive. This assumption may not be well founded.13

Protecting Your Rights
You can do several things in advance to protect yourself from under-or over-treatment should you become unable to communicate health care decisions:

(1) Read the section of the law concerning when medical interventions can be legally withheld if you have not made any advance directives,14 and obtain and review a copy of the MOST form.15 Think through whether you would want to continue living under the circumstances described and under what conditions.

(2) Familiarize yourself with under-treatment issues by obtaining and reviewing a copy of a pro-life "will to live" advance directive.16

(3) Acquire a general understanding of the physical nature of living in an unconscious state or with substantially limited cognitive ability.17 Discuss these terms, the types of care listed on the MOST form and the "will to live" with your doctor. Discuss, for example, if they think there are medical scenarios when antibiotics and artificial nutrition and hydration might be inadvisable.

(4) Discuss what you have learned and your quality of life values with your loved ones. Use these conversations to thoroughly explore both your desires for yourself and your family and their desires for you should you become seriously ill.

(5) Talk with a qualified lawyer about preparing either an advance directive or a HCPOA with advance directive provisions.

A HCPOA which has more extensive advance directive provisions than the statutory HCPOA and which allows, but does not require, your health care agent to authorize the withholding or withdrawal of life-sustaining measures is recommended. It avoids the risk that you might not anticipate a scenario in which you would want medical intervention and the risk that others may seek to enforce imperative language in an advance directive. You can also set out with some detail your quality of life values and instructions and define terms left undefined in the statutes. A HCPOA without advance directives would, by default, allow the withdrawal or withholding of life-sustaining measures in accordance with the statute discussed above and put no restrictions on a representative signing a MOST.

Whether an advance directive, a HCPOA, or a HCPOA with advance directives best suits your needs, a well-drafted instrument should attest to your values and provide, at least in a general way, for all contingencies. If necessary, you can amend the provisions of your HCPOA or advance directive and add additional specifications. If you have made your physicians, health care agent, spouse and other family members aware of your values and wishes, your legal documents should allow them to make decisions about your health care in a manner consistent with your desires.

Annette Rhodes is a North Carolina attorney who practices in this area. She is a partner in the law firm of Hendrick & Rhodes in Fuquay-Varina, North Carolina.

ENDNOTES

1 Timothy E. Quill, MD, and Howard Brody, MD, PhD, Physician Recommendations and Patient Autonomy: Finding A Balance Between Physician Power and Patient Choice, 125 Annals of Internal Medicine 763-769 (November 1, 1996) http://annals.highwire.org/cgi/content/abstract/125/9/763.

2 N. C. Gen. Stat. § 32A-15(a)(b) (2007); N. C. Gen. Stat. § 90-320(a) (2007).

3 Advance directives have been allowed in North Carolina since 1977, HCPOAs since 1991. Both statutes were amended in 2007. N.C. Gen. Stat. § 32A-15 et seq. (2007); N.C. Gen. Stat. § 90-320 et seq. (2007).

4 Schiavo, e rel. Schindler v. Schiavo, 358 F. Supp. 2d 1161 (M.D. Fla. 2005); Schiavo v. Schiavo, 403 F.3d 1289 (11th Cir. 2005). Stay denied by, Schiavo, ex rel. Schindler v. Schiavo, 161 L. Ed. 2d 518, 125 S. Ct. 1692 (2005).

5 Diana Lynne, The Whole Terri Schiavo Story, World Net Daily (March 24, 2005) http://www.worldnetdaily.com/news/article.asp?ARTICLE_ID-43463.  "Although severely brain damaged, Terri Schiavo breathes and maintains a heart beat and blood pressure on her own. While her vision is impaired, she can see and move her limbs. But she needs a feeding tube connected to her stomach to sustain her life."

6 Ninette Sosa, et al., Terri Schiavo Has Died, CNN.com (March 31, 2005) http://222.cnn.com/2005LAQ/03/31/schiavo/index.html.

7 Ninette Sosa, et al., Terri Schiavo Has Died, CNN.com (March 31, 2005) http://222.cnn.com/2005LAQ/03/31/schiavo/index.html.

8 N. C. Gen. Stat. § 90-322 (2007).

9 Id.

10 The statute uses the term "life-prolonging measures." N. C. Gen. Stat § 90-321(a)(2a)(2007)(by way of referring to N. C. Gen. Stat. § 32A-16(4)). We have used the phrase "life-sustaining measures" as a synonym since the difference is a matter of perspective, dependent upon a person's quality of life values.

11 N. C. Gen. Stat. § 90-21-17 (2007).

12 G. Holding, and L. Rocamora, Uses of and Variations on Statutory Forms, End of Life Planning: New Living Will, Health Care Power of Attorney and Organ Donation Statutes, p. III-7, N.C. Bar Assoc. Continuing Legal Education (October 10, 2007).

13 Instances of under-treatment may be on the rise. North Carolina Right to Life, http://www.ncrtl.org.

14 You can view the amendments to this area of the law in their entirety on the General Assembly's website.  http://www.ncga.state.nc.us/EnactedLegislation/Statutes/HTML/BySection/Chapter_90/GS_90-322.html.

15 You can view a copy of the MOST form at http://www.ncmedsoc.org/pages/public_health_info/end_of_life.html.

16 You can obtain a copy of a "will to live" from North Carolina Right to Life at http://www.ncrtl.org.

17 The advance directive statute allows the person executing the advance directive to choose to specify that treatment may be withheld when any, some, or all of the following conditions exist:
(1) The declarant has an incurable or irreversible condition that will result in the declarant's death within a relatively short period of time; or (2) The declarant becomes unconscious and, to a high degree of medical certainty, will never regain consciousness; or (3) The declarant suffers from advanced dementia or any other condition resulting in the substantial loss of cognitive ability and that loss, to a high degree of medical certainty, is not reversible.