Frankly Speaking: Talking Points When Counseling Clients on Completing North Carolina Advance Directives
Article Date: Friday, June 27, 2014
Written By: Barry K. Shuster
“So what we should plan is the living. Living until we die: what is most important to us; what is less important to us; situations that are acceptable; situations that are not acceptable. That’s the plan I am talking about.”-- Sarah H. Kagan Ph.D., R.N.
Prior to completing education and training as a bioethicist, I approached advance directive counseling as well as could be expected, being a lawyer without any particular experience or special insight on how these documents might come into play in the clinical setting. Typically, this involves emotionally-charged situations in which health care providers and family members are faced with difficult decisions regarding continuation or withdrawal of life-prolonging treatment measures.
I don’t think I was unique in this regard. Nor do I think my clients were unique in their lack of preparation to consider their wishes in an unimaginable medical moral crisis. Estate planning attorneys routinely offer the completion of advance directives as part of a “package” that includes wills, trusts and durable powers of attorney. However, given the importance that advance directive documents will have at the end of life, there are some important points of discussion that every attorney should consider having with their clients when advising them on completion of these documents.
Prior to stepping into an attorney’s office, a married couple who seeks to draft their wills is likely to have given some thought to the manner in which their assets should be passed to their heirs and, perhaps, who should be appointed as guardian(s) of their children if one or both of them dies. They are much less likely to have considered circumstances in which they become seriously ill or injured, sustained by medical technology with an uncertain or discouraging prognosis for recovery, and unable to express their wishes.
Indeed, most adults avoid or ignore these decisions. A 2008 U.S. Department of Health and Human Services report estimated that among the general adult population only about 18–36 percent of all adults had advance directives in place. End-of-life health care planning advocates have taken positive steps to increase public awareness of the importance of end-of-life planning, and to help individuals complete them.
Mass-distributed video productions such as “Consider the Conversation” (http://www.considertheconversation.org) have raised awareness of end-of-life planning. At local levels, pro bono legal projects seek to promote advance directive planning and assist people in completing the appropriate documents. A fair amount has also been written by lawyers for lawyers to explain the North Carolina living will and health care power of attorney documents. (See, for example, “Realizing the Promise of Advance Directives: A New Option for North Carolinians,” Prognosis, February 2014).
As lawyers, we should bear in mind that these documents come into play in hospital settings often involving family and even clinician moral distress. Clinician frustration with the effectiveness of advance directives in practice, particularly the living will, is well-documented. As noted by ethicist-physician Robert Orr, M.D., “The primary problem with living will-type advance directives is that the condition encountered is often not included in the wording. Or, the person may refuse an option while writing about a theoretical situation that, in fact, the person might accept when faced with the reality of that situation.” Orr, Robert D., “Medical Ethics and the Faith Factor,” Cambridge UK;Wm. B. Eerdmans Publishing Co., 2009.
The North Carolina statutory living will and health care power of attorney forms can provide effective guidance at the end of life with proper attorney counseling. This article will attempt to provide practical “talking points” for attorneys who counsel clients on completion of advance directives so that these documents can be as effective as possible in the unfortunate event they are required.
North Carolina law provides statutory forms for both the living will (N.C.G.S. § 90-321(d1)) and health care power of attorney (N.C.G.S § 32A-25.1). There is no legal requirement to use the North Carolina statutory forms, though as a matter of practice, many attorneys utilize them. In fact, as the aforementioned February 2014 issue of Prognosis reported, health care providers and their advisors in North Carolina’s Triad region recently joined efforts to modify the North Carolina statutory living will and health care power of attorney forms by combining them into a single, simplified advance directive form to make them as understandable and easy-to-complete as possible. This article would apply to counseling clients to complete this permutation of the North Carolina advance directive, as well as any other advance directive meeting the requirements of Article 23 of Chapter 90 of the North Carolina General Statutes (living will) or of Article 3 of Chapter 32A (health care power of attorney).
What’s the Deal? | While most lawyers appreciate this fact, it is always worth remembering that many laypersons view legal documents with varying degrees of trepidation. Advance directives, which are attested to, notarized, and contain declarations that literally have life and death consequences, can be daunting, particularly to the client without much sophistication in legal matters.
Framing the purpose of completing advance directives in practical, non-legal terms, and explaining when the documents will become effective helps ease into a meaningful discussion. Completion of these forms, ideally, should be rooted in a larger conversation about the client’s goals in order to avoid a perfunctory exercise in which clients take a deep breath, check the boxes, and, fail to meaningfully consider their wishes at the end of life.
To understand fully the importance of the advance directive, clients and attorneys must appreciate that modern medicine seeks to honor patient “autonomy” as much as is possible and practicable. That advance directives give clients control when they are most vulnerable seems to resonate particularly with clients. Ideally, advance directives keep the clients “in the driver’s seat” for their health care decisions when they are incapable of expressing their wishes.
Attorneys counseling clients on the completion of advance directives may also want to explain that advance directives are “springing” documents, which do not “spring” into play until a physician declares the patient “incapacitated” or unable to make or understand health care decisions on his or her own behalf. The client “signs away” nothing. As long as he or she has the ability to understand and appreciate the consequences of their decisions regarding their health care, and communicate them to caregivers, the advance directives remain dormant. While this may seem very basic to practicing attorneys, many clients are unaware of even the most basic points of law with respect to advance directive documents, and can benefit from a very practical discussion of these issues.
The client may also need to be advised regarding their right to cancel or change the provisions of their advance directive documents. The living will and health care power of attorney, like all estate planning documents, can be changed or voided at any time, as long as the declarant is competent. Assuring the client that they can change their mind and revoke their advance directives at any time, should they choose to do so, is appropriate and can be a source of comfort to some clients.
Who Is Your Agent? | Attorneys counseling clients on completion of advance directives may want to begin their discussion with the health care power of attorney. Framed in practical terms, this discussion will involve asking whether the client has one or more persons he or she would trust to “stand in their shoes” as a decision maker if they were incapacitated. This often serves as a good starting place for discussion, as this is arguably the most important decision for the client with respect to completion of their advance directive documents. A living will completed, perhaps, three, five or ten years ago might not be a true reflection of what the client would choose to endure medically today. A health care power of attorney document may grant the health care agent the power to revoke or override a previously-executed living will document. Thus, a genuine “surrogate” can be one of the most powerful allies for patients who cannot speak for themselves.
An agent appointed through a health care power of attorney has legal power to act on the principal’s behalf with respect to health care decisions, to the extent specified in the document. An ideal health care “surrogate” is more than an agent; it is someone who knows the patient’s concerns and values today, and who is committed to carrying out the patient’s wishes (or best interests if such wishes are unknown), regardless of the surrogate’s own values or beliefs. As Dr. Robert Orr notes in “Medical Ethics and The Faith Factor”:
“Once a surrogate is identified … he or she is expected to use substituted judgment in reaching a decision,” Some people misunderstand this concept and think the surrogate is to substitute his or her judgment for that of the patient. Rather, it means the surrogate is to substitute a process to arrive at the decision that the patient would make, based on the patient’s written or verbal expressed wishes, or an understanding of his or her wishes.” Id.
Some clients already have a surrogate decision-maker in mind. Some clients will realize there is no person who fits that bill. And some will simply default to an individual without the appropriate level of consideration. It is the latter case, in particular, which a thoughtful attorney can help the client to avoid. Often, advance directives are completed along with wills and trusts by estate planning attorneys. In these cases, care should be taken to prevent persons named as executors and trustees from becoming default health care agents, without additional contemplation of the appropriateness of this designation.
For example, assume your client’s eldest son in California is an accomplished and savvy executive and might be the natural choice to serve as executor of the client’s will, even though he visits your client (a North Carolina resident) fairly infrequently. While probate and distribution of assets are business-type decisions and do not require immediate attention or insight into the decedent’s values, serving as an effective surrogate requires knowledge of the declarant’s wishes and values at the time of their incapacity. The client’s youngest daughter, who lives near your client and visits him several times a week at his retirement community, might be a superior choice to her accomplished older brother, given her established and on-going communication and relationship with the client. End-of-life decision-making often requires the surrogate to be immediately available and often involves decisions that cannot be made remotely over the telephone. These situations may require detailed and difficult face-to-face conversations with the client’s health care provider team.
One way to stimulate earnest consideration of who might serve as a health care agent for the client is to review with the client North Carolina’s “statutory hierarchy” of decision-makers in the absence of a health care agent. North Carolina General Statute Section 90-322 sets forth the legally prescribed order of decision makers who may consent to withdrawal of life-prolonging measures for a person who lacks decisional capacity and has no living will:
- The patient’s spouse.
- A majority of the patient’s reasonably available parents and children who are at least 18 years of age
- A majority of the patient’s reasonably available siblings who are at least 18 years of age
- An individual who has an established relationship with the patient, who is acting in good faith on behalf of the patient, and who can reliably convey the patient’s wishes
If none of the above is reasonably available then, at the discretion of the attending physician, the life-prolonging measures may be withheld or discontinued upon the direction and under the supervision of the attending physician.
This statutory order might make perfect sense for the client; however, in some cases, clients can immediately envision the disagreement and distress that could result with certain family members representing their wishes during a medical crisis. Even the closest of families oftentimes have complex dynamics and varying degrees of dysfunction. Loved ones may bring fear, guilt, personal values, and self-interest to the bedside, or may otherwise be overwhelmed by the circumstances.
It takes a special person to have a well-informed and reasoned conversation with health care providers on the continued course of treatment for a close relation, despite the emotional nature of the situation, and to make decisions that comport to their best understanding of the patient’s wishes, even if they are difficult and painful, such as withdrawing care. That person might be a particular child or sibling, or even a close friend. A health care power of attorney puts that decision in the client’s control. Therefore, it is vitally important to help your client carefully consider their best choice of surrogate(s).
Whomever the client selects as his or her health care agent(s) (the statutory form encourages listing as many as three, in order of preference), the client would be well-advised to share his or her concerns, opinions and values with the agent(s) regarding end-of-life care. This helps to assure that the agent(s) have a complete understanding of the client’s wishes at the end of life, and have some basis to arrive at a decision that the patient would make for him or herself, if he or she had the capacity.The Living Will
| The North Carolina statutory living will avoids some of the inherent weakness of living wills as described above by Dr. Orr. For one, it clearly limits the situations in which the declarant can choose to request that his or her life not be prolonged “by life-prolonging measures” to incurable conditions with imminent death, likelihood of never regaining consciousness, and severe cognitive impairment. N.C.G.S § 90-321(d1).
While there are conditions that might not fit neatly into these descriptions, the language is not so broad as to include circumstances in which life-sustaining measures offer a chance for meaningful recovery. There are conditions, such as pneumonia and traumatic injury, in which a patient might only survive in the short term with the assistance of mechanical ventilation and artificial nutrition and hydration, but has reasonable likelihood of recovery.
Again, it is worth reminding the client that the living will springs into action only if a physician declares them incapacitated. Capacity is a serious medical diagnosis, and not taken lightly, which is why only a physician is licensed to make that determination.
The North Carolina living will creates some challenge for the attorney when the client must contemplate if he or she would want artificial hydration and nutrition (“tube feeding”), even though he or she wishes not to have other life-prolonging measures. Some clients will have no problem with this provision, based on some emotional or philosophical position, even if it is simply the notion that they do not like the idea of being dehydrated or starved, regardless of their medical condition. Others will ponder this provision quizzically. The basis for this decision has medical and religious implications that go beyond the scope of this article. However, it is worth mentioning that in some cases, it is medically prudent to withhold hydration and nutrition to reduce patient suffering, and that with proper “palliative” care (which the North Carolina statutory form living will references in the provision “I wish to be made as comfortable as possible”) the patient likely would not experience hunger or thirst as we conceive it as fully functioning persons.
As a religious matter, hydration and nutrition might be excluded from the definition of medical treatment, but rather, may be considered basic human rights which should not be withheld under any circumstances. This idea has evolved in recent years, and can vary based on the patient’s level of adherence to the tenets of his or her faith. Nevertheless, if a client has significant concerns about complying with the tenets of his or her faith, this is an issue he or she might want to discuss with a spiritual leader.
On that note, religious preferences often create complexities in end-of-life care decisions. Some of the issues are based on well-established religious doctrine, such as Jehovah Witness prohibitions against receiving blood transfusions. Others might be based on a patient’s, or his or her family’s, own concept (or even misunderstanding) of a certain faith.
Advance directives may be modified to include language referencing a particular religious authoritative figure to provide religious tenet guidance to the family or health care providers. For example, Orthodox Jews will execute “halachic” living wills, which designate a certain rabbi to consult on matters related to Jewish law. (Halacha is the collective body of Jewish religious laws.) In this case, the rabbi would not make end-of-life care decisions; rather, the rabbi would provide guidance on how Jewish law would approach a particular issue. These types of living wills are more likely to be encountered in states in which there are large Jewish populations. Catholic declarants might create something similar to designate a priest as a religious consultant.
If an attorney is serving devoutly religious clients for whom these matters are important, he or she might be well-advised to include language into the advance directives for his or her clients that would not conflict with the statutory requirements, but would provide a learned consultant to help family and health care providers navigate the declarant’s belief system. In many cases, an expert in a particular religion can provide clarity and guidance in difficult circumstances, which would be welcomed by surrogates facing very difficult decisions at the end of their loved-one’s life.
A provision of the living will form that is curious for some attorneys and clients is the section that prompts the declarant to direct his or her health care agent to follow the living will or gives the agent authority to make decisions that are different from what he or she has indicated in the living will. This naturally raises the question, “Why bother with the living will if I am allowing the health care agent to override my wishes?” There are several explanations in a practical sense. First, again, a living will is a snapshot in time, and a diligent health care agent might have reason to believe it does not accurately reflect the declarant’s values at the time it springs into play, based, for example, on a more recent conversation with the declarant. Or, there could be unique medical circumstances in which the language of the living will does not provide clear guidance for health care decision makers. In these situations, it may be beneficial for the health care agent to have some flexibility in decision-making.
In other situations, the living will can provide the health care agent comfort in decision making. It is not uncommon for health care decision makers to experience moral distress over instructions to withhold or withdraw life-prolonging measures, including “tube feeding,” even though such measures may be futile in terms of achieving any meaningful recovery. In some cases, the decision-maker might even feel he or she is “killing” the patient, by authorizing the withdrawal of life-sustaining treatment in such circumstances. In these cases, the agent can lean on the living will to validate the wishes of the declarant, with which the agent might personally struggle, and not having the authority to override the living will provisions may actually provide comfort and certainty to the health care agent in their role as decision-maker.
As noted, the declarant can instruct the agent to follow the living will verbatim if he or she is adamant about the directives. In these cases, the agent and health care providers are obligated to abide by the living will as closely as possible. The client should bear in mind, however, if the language of the living will does not neatly address the particular circumstances, or if there is evidence that the executed document might not be an accurate reflection of his or her wishes at the time it comes into play, it can create conflict for all who are involved the client’s health care decisions.
Clients who are struggling with a serious illness having a discouraging short-term prognosis, and who want to ensure absolutely that they are not sustained by intensive medical care, and/or are not resuscitated should they arrest at home or in a health care facility, might be advised to consider either a portable Do-Not-Resuscitate (DNR) or Medical Order for Scope of Treatment (MOST) form. These are medical orders that require execution by a physician, physician assistant or nurse practitioner; however, if clients are not aware of these forms, the attorney should at least be familiar with them so as to advise clients properly of their application.It Usually Begins with the Lawyer
| Bioethics, health care and legal communities are “getting out the word” about the importance of end-of-life health care planning and continuing to help make the process less intimidating. Nevertheless, the living will and health care power of attorney are legal documents best prepared with the assistance of attorneys. If advance directive public awareness efforts are to be as effective as possible, attorneys need to be effective in counseling their clients on advance directive completion.Barry K. Shuster, MBA, JD, MSB is an attorney and clinical and research bioethicist in Cary, N.C. He serves on the hospital ethics committee at WakeMed Health & Hospitals in Raleigh, and is a member of the Copernicus Group and Divers Alert Network institutional review boards in Durham. A 1999 graduate of North Carolina Central University School of Law, Barry received his master’s degree in bioethics from Union Graduate College-The Icahn School of Medicine at Mount Sinai, and served a two-year clinical ethics internship at UNC Health Care.
Views and opinions expressed in articles published herein are the authors' only and are not to be attributed to this newsletter, the section, or the NCBA unless expressly stated. Authors are responsible for the accuracy of all citations and quotations.