Editor's Corner: Ethical Issues of Advance Directives
January 2003, Vol. 8, No. 1
ISSN 1540 5273
Carol A. Schwab
A recent case in North Carolina addresses the issue of whether survivors must honor the wishes of a patient who does not want life support. The case is currently at the trial level, however, and the issue must be appealed to a higher court before we have a definitive answer. The case involves a 27 year-old woman, Tina, who is in a vegetative state as a result of complications following surgery. Before surgery, Tina had signed a living will indicating that she did not want to be kept on life support systems under these circumstances. Her parents are suing the hospital for malpractice and asking for $48 million for their daughter's pain and suffering and for ongoing medical expenses over her projected life span of 50 more years. The hospital moved to dismiss the request for $48 million, arguing that Tina's parents are overriding her desires and demanding life support so they can make more money from their lawsuit against the hospital. The trial judge ruled, without elaboration, that the hospital is not liable for the estimated $48 million in special damages. This issue is subject to appeal, but the underlying malpractice lawsuit is not affected by this ruling.
If the issue is appealed to a higher court, lawyers, medical providers, and interested citizens will be awaiting the outcome with keen interest. The case has the potential of answering at least some of the legal and ethical questions surrounding advance directives and end-of-life issues that have been debated in North Carolina for years. What issues will be addressed, if any, may prove as interesting as the outcome. Some of the potential legal/ethical issues that may arise include:
- What is the role of the family in end-of-life decisions?
- What is the role of advance directives in rationing health care as resources dwindle?
- What constitutes a living will?
- Should a living will be mandatory?
- If there is a conflict between a living will and health care power of attorney, which document should control?
What is the role of the family in end-of-life decisions?
If the patient does not have an advance directive, family members (with some having priority over others) have the right to authorize medical decisions, including the right to authorize terminating life support systems. If there is an advance directive, what role, if any, do family members have? The North Carolina statutes do not address the role of family members if there is an advance directive, and arguably, they have no role. As a practical matter, however, families often play a significant role in end-of-life decisions regardless of whether there is an advance directive. Anecdotal evidence indicates that many doctors will postpone honoring a living will if the family is in opposition. Many doctors report that they do so out of compassion for the family, giving them a few extra days to help them accept the inevitable. Doctors also report concerns for malpractice claims if they terminate life support systems too early against family wishes.
As Tina's case illustrates, however, a family's opposition to terminating life support systems may be motivated by economics. Tina's case is newsworthy with millions of dollars at stake, but health care providers increasingly report instances where families oppose terminating life support systems because they will lose the patient's Social Security or disability check. For this same reason, some families also oppose transferring the patient to a nursing home, opting for the more expensive hospital bed which is covered by Medicare. Medicaid, which covers nursing home care, would divert the patient's income to pay costs. Thus, whether it is for millions of dollars or subsistence checks, families may have economic motives behind the end-of-life decisions they make for loved ones. Tina's case promises to squarely address this issue, at least in cases where there is a living will.
On the opposite side of the coin, are the families who are overly eager to honor a loved one's living will. While some families are motivated by a sincere desire to honor a loved one's wishes, some are also motivated by economics. Consider the following cases, all of which are based upon information provided to the author by someone closely involved in the case.
- A family member attempted to stop Emergency Medical Services from taking a heart attack patient to the hospital because the patient had a living will. The EMS squad later found out that the family member would have inherited a great deal of property if the patient had died. (He was taken to the hospital and recovered from the heart attack.)
- A family insisted that their husband/father be removed from life support systems as expressed in his living will, despite doctors' concerns that it was too early to make that determination. The family threatened a lawsuit and nonpayment of medical bills. The patient made a full recovery, and when he learned from his doctor at how insistent his family had been to honor his living will, he revoked it.
- A hospital social worker related a case where they believed the patient's living will had been forged by a family member who stood to inherit the patient's car.
- A health care agent refused to authorize feeding tubes for an "inconvenient" uncle who could not swallow, despite the patient's repeated request for sustenance and, disturbingly, despite the patient's apparent competence. (A health care agent has no authority if the patient is competent and able to make his or her own health care decisions.) The nursing home staff, believing they had no choice, watched the patient slowly starve to death.
Defining the family's role in end-of-life decision-making is a complex issue that will require creative solutions to find a delicate balance between accommodating a family's legitimate concerns and preventing abuse of the process.
What is the role of advance directives in rationing health care as resources dwindle?
Tina's case highlights an issue that is increasingly being asked by politicians, medical providers, economists, and taxpayers. As the need for medical care far exceeds the resources available to pay for it, how does the system prioritize needs? Is it ethical to keep someone who is in a vegetative state on life support systems for 50 years when the resources could be used to help someone else maintain quality of life? However the courts may ultimately rule in Tina's case, public policy is likely to have a significant influence.
What constitutes a living will?
Lawyers in North Carolina have debated for several years about whether a living will must meet the legal requirements that are set forth in the statute. A few argue that a mere verbal statement made to the doctor should be sufficient to enforce a patient's wishes and result in sanctions against a medical provider who fails to honor the verbal statement. This position is extreme and not supported by authority. Most lawyers agree that the statutory requirements should be met, but there is room to argue over what those requirements mean.
In Tina's case, the lawyer representing her parents is likely to look for any reason on appeal to discredit her living will. If it does not meet all of the requirements under North Carolina law, will it be enforceable, or will her parents' wishes prevail? The case illustrates the importance of executing an advance directive so that it complies with state law. True, in most cases it may not matter. The family and the doctors agree to terminate life support systems allowing the patient to quietly slip away. But, to ensure that the patient's wishes are honored in extreme cases like Tina's, the i's need to be dotted, and the t's crossed. Anything open to question is open to challenge.
Should a living will be mandatory?
Should medical providers be required to follow a patient's living will? The statutory language in North Carolina is discretionary -- "extraordinary means or artificial nutrition or hydration, as specified by the declarant, may be withheld or discontinued upon the direction and under the supervision of the attending physician." (N.C.G.S. § 90-321(b)(2)) (emphasis added).
Some states have adopted mandatory schemes, allowing medical providers to decline to honor a patient's living will only upon the basis of "sincerely held religious beliefs or sincerely held moral convictions." The medical provider must promptly notify the appropriate person of his or her refusal to honor the decision and assist in the transfer of the patient to another health care provider. (General Statutes of West Virginia § 16-30.12). North Carolina legislation does not contain a similar provision, presumably because the drafters intended it to be a decision within the discretion of the medical provider.
In Tina's case, the medical provider is in the reverse role, arguing that it is against public policy to override a patient's written desire not to be kept alive on life support systems under these circumstances. The family is in the position of arguing that honoring Tina's living will is discretionary. It will be interesting to see whether the court in Tina's case will try to reconcile the discretionary language of the North Carolina statute with the patient's constitutional right to refuse extreme life-sustaining medical treatment.
If there is a conflict between a living will and health care power of attorney, which document should control?
Under North Carolina law, if a patient has both a living will and a health care power of attorney, the living will controls if there is a conflict between the two. This rule is coming under question as more and more attorneys advise their clients against executing a living will in favor of a health care power of attorney. The health care power of attorney provides more flexibility than a living will, giving a client more control over the conditions under which life support systems may be terminated. As long as the health care agent is willing to advocate on behalf of the patient, a health care power of attorney, without the living will, provides the greatest insurance that a patient's wishes will be respected.
What happens if the health care agent chooses not to advocate on behalf of the patient? In Tina's case, her legal representatives (parents) have an interest that is adverse to her wish not to be sustained on life support systems. Her living will speaks on her behalf, and without it, her wishes would go unheard. Do her parents have the right to revoke her living will? Arguably, a health care agent has the right to revoke the patient's living will unless the agent has been expressly denied this power. Does this power extend to other legal representatives?
Getting back to the question -- which document should control? Currently in North Carolina, the living will controls if there is a conflict between the two documents. However, if the the health care agent or other legal representative can revoke the living will, what does it mean to say that the living will controls if there is a conflict? Perhaps the most important question is whether the person executing the documents can rely upon his health care agent to advocate that his wishes be respected.
Tina's case, if appealed, may help resolve some of the questions raised in this editorial. Legislative reform is also needed. In the meantime, our thoughts and prayers are with Tina, who is completely unaware of the impact she may have on North Carolina law.
Carol A. Schwab, Professor and Family Resource Management Specialist, North Carolina Cooperative Extension Service, N.C. State University. Professor Schwab has published extensively on the topic of advance directives, and she is currently chairing a task force for the Elder Law Section of the North Carolina Bar Association to assess the need for legislative change to North Carolina's law on advance directives.
Cite this article:
Schwab, Carol. 2003. Editor's Corner: Ethical issues of advance directives. The Forum for Family and Consumer Issues 8(1).