Note: This file contains the text of an article that appeared in Popular Government, v. 62, no. 4, Summer 1997, 38-49. © Copyright 1997. Institute of Government. Delineations within the text indicating titles and headings are preserved. No attempt has been made to display graphic images or pagination of the typeset article. Footnote numbers, which appear in brackets at the reference point in the article, are linked to the footnote text. Figures and tables have been omitted. A printed copy of this article may be obtained for a photocopying fee of $.10 per page with a $2.00 minimum.

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The authors are lawyers in the Department of Social Medicine in The University of North Carolina School of Medicine. Ms. Davis is also a registered nurse.

All people have a powerful interest in retaining control over decisions about their own health care and medical treatment. Some of the important and difficult health care decisions they face concern their preferences for the treatment they want-or don’t want-when they cannot speak for themselves. This is Part Two of an article [1] intended to provide basic information that individuals, families, health care providers, and policy makers in North Carolina can use to improve popular and professional understanding and implementation of advance directives for medical decision making.

Part One discussed the constitutional and common law recognizing people’s right to make decisions about their own health care and the North Carolina statutory scheme for advance directives and end-of-life decision making. Part Two deals with a fairly recent addition to prospective planning, requests for do-not-resuscitate (DNR) orders outside the hospital, and the North Carolina Supreme Court’s decision in First Healthcare Corporation v. Rettinger. That case, which deals with payment for nursing home care, is the state’s first high court decision relating to end-of-life decisions. Both parts of the article address the questions, issues, and problems that can arise for the many parties involved in medical decision making. The focus is on the breadth of the right to make both current and prospective medical treatment choices, which includes both requesting and refusing treatment. But Part Two also addresses problems that arise from the most common use of advance directives-refusing treatment at the end of life.

Part One introduced (hypothetically) Julia Hawthorne, a patient who received aggressive treatment and ventilatory support. This eighty-year-old widow first was hospitalized after a mild stroke. During that hospital stay, after talking with her longtime physician, Dr. Martin, she asked for and received a DNR order. Unable to return home when discharged, Mrs. Hawthorne was transferred to a nursing facility. A few months later she returned to the hospital with severe pneumonia. Many treatment decisions were necessary, but the respiratory failure caused by the pneumonia had compromised Mrs. Hawthorne’s capacity to make health care and treatment decisions for herself.

Several factors contributed to the decision to place Mrs. Hawthorne on a ventilator. Hospital policy did not allow the staff to honor the DNR order from her previous hospitalization because it had expired. Like many people, Mrs. Hawthorne had no formal advance directive to guide the decision making, nor had Dr. Martin documented her wishes. The hospital turned to Dan and Rita, Mrs. Hawthorne’s two children, to make treatment decisions for her. Unfortunately they disagreed: Dan consented to aggressive treatment with ventilatory support, while Rita viewed this as contrary to what their mother would want.

Mrs. Hawthorne’s situation is not unusual. Yet, although the various stakeholders may seem at odds, both resolution of the problem and advocacy for Mrs. Hawthorne and people like her are possible-not only when the decision must be made at the end of life but whenever people cannot voice their own treatment choices.

So What Happened to Mrs. Hawthorne?

Dan and Rita went to talk to the chairperson of the hospital’s ethics committee (who, surprised to learn that once Mrs. Hawthorne’s DNR expired no one on staff had considered it evidence of her wishes, immediately began planning a series of staff education programs on end-of-life decision making). After much discussion, Dan and Rita decided to request both a DNR order and withdrawal of their mother’s ventilatory support. The orders were written.

North Carolina law and the hospital’s policies on DNR orders and withdrawal of treatment recognize adult children as legitimate substitute decision makers for a patient who is unable to make his or her own decisions regarding treatment and does not have an advance directive. [2] Dan and Rita’s authority included withholding and withdrawing treatment for their mother; this broad authority is accompanied in the statutes and in hospital policies by such safeguards as confirmation of the patient’s condition by a second physician and the availability of ethics committee consultation.[3]

These decisions for Mrs. Hawthorne were especially difficult for Dan. His original decision to continue treatment was based on his religious views, but the ethics committee chairperson, his sister, the hospital chaplain, and the pastor of his church helped him reconcile his beliefs with his mother’s wishes. The staff helped by making clear to him that the decisions to withhold CPR (cardiopulmonary resuscitation) and to stop the ventilator would not affect any other medical treatments. They also explained “comfort care” (also called “palliative care”) to him. Emphasizing what would be done for his mother, rather than what would not be done, the staff discussed with Dan the oral and skin care, positioning, pain management, and emotional support (communicated through the words and touch of her caregivers) that would be part of her daily care. [4]

As sometimes happens, however, nature did not follow anyone’s expectations. The ventilator was withdrawn, but Mrs. Hawthorne breathed on her own. She was still confused and only intermittently conscious; plans were made to transfer her back to the nursing home because she no longer needed hospital care. Her attending physician obligingly wrote a second DNR order, intended to be effective only during the transfer and to expire when she arrived at the nursing facility. Dr. Martin assured Rita and Dan that he would call the physician at the nursing home about a new DNR order to cover their mother’s admission. One thing was different, however: Mrs. Hawthorne now had a nasogastric tube that delivered medication for her pneumonia. Asked about its removal just before Mrs. Hawthorne’s discharge, the attending physician said only, “Don’t worry. They’ll take care of that at the nursing home.”

When she was discharged, the nursing staff called Emergency Medical Services (EMS) to take Mrs. Hawthorne back to the nursing facility. In reviewing the patient’s orders and medical history, the EMS personnel were happy to find the DNR order for transport-the time period when they would be the only medical personnel with her. Overhearing their conversation, Rita asked, “Why did you need another DNR order when we already have one?” An EMS technician replied, “We can’t honor the hospital’s DNR order. Without our own DNR order, we are obligated to give your mother CPR if she arrests during the trip.”

Out-of-Hospital DNR Orders

It may seem strange that the only way to avoid CPR, unlike other medical treatment, is by getting a doctor to write an order not to do it (a DNR order)-and maybe more than one order. After all, if someone does not want surgery, or does not want to take a recommended medicine, he or she can (with a few exceptions) avoid these treatments. Why do we need DNR orders anyway-isn’t an advance directive (if we think of it) or a protest by our family enough?

Let’s look back at Mrs. Hawthorne’s two hospitalizations: During her first hospitalization, after her stroke, she stated her desire to forgo CPR and received a DNR order communicating her informed decision-no cardiac resuscitation if her heart or breathing stopped-to the hospital’s nonphysician staff. That order, intended to apply in the future at a time when Mrs. Hawthorne would not be able to speak for herself, was based on her request to her attending physician. When she returned to the hospital, after pneumonia and respiratory failure made her unable to make any treatment decisions, the attending physician and the hospital turned to her adult children to decide about her treatment. On their request, based on what they believed would be their mother’s wishes if she could tell them, another DNR order was written.

Without these orders, the nonphysician staff would be obligated to resuscitate her, and they would be privileged to act without her consent. Even if Mrs. Hawthorne had an advance directive, the nonphysician staff would still need an order not to resuscitate. An advance directive is not an order. It is evidence of an individual’s wishes and a communication from that person to the physicians who are offering treatment. Physicians have the expertise and judgment to act on patients’ advance directives; nonphysicians need a physician’s orders if they are to deviate from the presumption that patients want emergency treatment like CPR.[5]

CPR is different from most medical treatment because patients are incapacitated at the time it appears necessary, but are presumed to want it; therefore physicians’ orders are needed so that patients can refuse it. But DNR orders halt only CPR. Any other treatment may still be given-even one that may otherwise be part of resuscitation efforts. (For example, the ventilatory support often used in resuscitation could be offered to a DNR patient if there was no other way to make that patient comfortable in the face of severe respiratory distress.) In the hospital setting, many patients may request a DNR order, including both terminally ill patients of any age (adults or minors of sufficient maturity) and otherwise “healthy” patients whose beliefs and convictions lead them to reject CPR.

But things change when patients leave the hospital-even when their condition and wishes do not change. Until 1991 North Carolinians who wanted to preserve their DNR status when they left the hospital, or to secure a DNR order outside the hospital, could not do so. Here is why: In the hospital, nonphysician health care providers who are hospital employees may refrain from instituting CPR by following the order of any physician with hospital privileges. Outside the hospital, however, it is almost always EMS personnel who are called on to honor DNR orders. Their authority is necessarily limited, with some exceptions, to the standing orders and protocols developed and approved by their own physician medical directors. In most circumstances, EMS personnel are not permitted to carry out medical orders given to them by other physicians.

In the past the limited discretion of EMS personnel and their statutory mandate “to prevent loss of life” [6] caused problems once patients started leaving the hospital for other settings. As a result, some care providers counseled certain patients to avoid calling EMS. Suppose a patient with a DNR order in the hospital went home, where her condition worsened. Her concerned family wanted to call EMS for assistance but not for CPR. Avoiding CPR was nearly impossible: Unless a physician was on site to give a DNR order (an unlikely possibility) and the EMS personnel called to that site received telephone permission from their own medical director to accept that order, they had to initiate CPR-even over the objections of family members or friends who explained the patient’s contrary wishes or past DNR status, or presented her living will. [7]

Nobody was happy about this situation. If individuals were to be given a choice about CPR outside hospitals, a way had to be found to provide EMS with a valid DNR order. In 1990 the North Carolina Medical Society convened a task force that developed an out-of-hospital DNR order that EMS could honor. Not just any DNR order by any physician-nor any advance directive or request from a family member-will do. EMS personnel are trained to accept only one special, notarized yellow form, which physicians obtain from the medical society. This form combines an out-of-hospital DNR order with evidence of its statutory basis; [8] it enables EMS personnel to withhold unwanted resuscitations, yet it also includes safeguards so that only unwanted resuscitations are withheld.

Currently, out-of-hospital DNR orders may be written only for individuals who meet the narrow and explicit statutory criteria found in the Natural Death Act as originally written. [9] Terminally and incurably ill adults or their authorized representatives may request an out-of-hospital DNR order for use at home or in nursing facilities that rely on EMS for emergency treatment. Although that order serves many North Carolinians well, it leaves out other citizens who wish to refuse CPR on the basis of more recent statutory changes or their common law right to refuse treatment.

Mrs. Hawthorne obtained an out-of-hospital DNR order under this system because the attending physician was willing to diagnose her as meeting the “terminally and incurably ill” statutory criterion on which it relies. Another physician might have thought differently and found her ineligible for a transport DNR order-while eligible for a hospital order. Many attempts are made by patients, family members, and health care providers to modify the yellow forms to conform to the needs of other people who wish to refuse CPR but fall outside the yellow form’s narrow categories-for example, frail but functional elderly adults. However, an altered yellow form is invalid, and EMS cannot honor it. [10]

The North Carolina Medical Society has convened another task force, this time to update the out-of-hospital DNR order first offered in 1991. [11] Although the update is not yet complete, the task force hopes to change the yellow form to create a simpler DNR order, with a separate documentation sheet indicating broader bases for the order. At the very least, conforming the statutory basis of the DNR order to include recent amendments to the “natural death” statutes and the new health-care-agent statute [12] would better serve North Carolinians in all settings. A simple, portable order for the individual to keep handy, with separate documentation of the evidence supporting it, would protect people from unwanted CPR and assure health care providers and other interested parties that their refusals are genuine and well informed. North Carolinians should have the same right to refuse CPR whether they are hospitalized or not.

More Decisions for Mrs. Hawthorne

Mrs. Hawthorne’s EMS transfer was uneventful. As he had promised her children he would do, and before he left on an extended vacation, Dr. Martin called the nursing facility to talk to a physician. Dr. Bladen, the physician on call for admissions, was not there; unlike hospitals, nursing homes generally do not have medical staff present at all times. Dr. Martin left a message requesting a DNR order for Mrs. Hawthorne on the basis of his conversation with her during her first hospitalization. Noting the message and the fact that the existing DNR order had expired when the EMS transport ended, the admitting nurse called Dr. Bladen to tell him that Mrs. Hawthorne had arrived and that her children had already requested both the DNR order and removal of the nasogastric tube. Dr. Bladen added this matter to the long list of things he needed to address on his rounds that day.

During rounds, it became clear that Mrs. Hawthorne was not doing well. Dr. Bladen noted that she was semiconscious and agitated and appeared uncomfortable. It was unlikely that she could eat, even with assistance. Although Rita, with Dan’s quiet acquiescence, insisted that it was time to remove the nasogastric tube, to their surprise Dr. Bladen would write neither the order to remove the tube nor a new DNR order. He told them, “I can’t write those orders. It’s against this facility’s policy to write a DNR order for patients like your mother. And if she can’t eat, she needs the tube for feeding now, not for medication. We can’t let her starve.”

Explaining that Dr. Martin and the attending physician at the hospital were both willing to write such orders for their mother in her current condition, Dan and Rita asked the nursing home administrator to assign another physician who would write the DNR order and remove the tube. The administrator replied, “I can talk to our medical director about your mother, but I can tell you that no doctor can make your mother a DNR patient or order the removal of her feeding tube now. She’s not terminally ill or in a persistent vegetative state. It is our policy not to withdraw treatment except in accordance with one of the North Carolina statutes, and your mother’s circumstances do not meet any of the statutory requirements. Our lawyer tells me that we even have a new court decision to support that policy. We’re sorry, but we have to follow the law for your mother’s protection.”

After coming to their hard-won agreement about what their mother would want, Rita and Dan could hardly believe their ears. To them, nothing had changed: Their mother was uncomfortable, unhappy, and certainly not living in a state she would have chosen. Physicians outside the nursing home endorsed a DNR order on her behalf, but she had no current order and therefore would receive CPR if her heart or breathing stopped. Her feeding tube was now providing “artificial nutrition and hydration,” which the hospital physicians, the children thought, would have withdrawn just as they did the ventilator. How could Dr. Bladen proceed with this treatment, knowing their mother’s history and the unified objections of her children? How could the nursing home administrator say that, unlike the hospital, the nursing home would not help them do what their mother would want?

Fortunately, as a result of their experience with the hospital, Dan and Rita had learned a little about how to work the system. When they asked to see the nursing home’s policy, they discovered that it was no more than a reprinting of the conditions listed in the Natural Death Act. According to the policy, only “terminally and incurably ill” adults and those in a persistent vegetative state (or their representatives) could refuse “extraordinary” treatment like CPR and artificial nutrition and hydration. [13]

Next, Dan and Rita talked to the nursing home’s lawyer at his law office. (Few health care facilities are able to employ “in-house” counsel; many lawyers for health care facilities thus have less experience within the facility than they would like.) The lawyer praised the clarity of the nursing home policy’s statutory formulation and cautioned that doctors who order cessation of treatment outside those narrow statutory categories rely on the “less safe” common law right to decline treatment: “Our doctors have more legal protection because of our policy. That makes them more confident and their decisions more certain, without compromising patient care. After all, our position is supported by the North Carolina Supreme Court.”

With this new and confusing information, Dan and Rita returned to the nursing facility hoping to find a sympathetic and thoughtful advocate, as they did when they consulted the ethics committee at the hospital. They asked whether the nursing facility had an ethics committee, ethics consultant, ombudsman, or patient advocate, but there was none. The administrator explained, “Since the passage of the Patient Self-Determination Act, we ask folks if they have advance directives, and if they do, we place them in their charts. We haven’t had time to worry about these other things. Besides, we have a very good lawyer and medical director, and everyone here cares about the residents.”

Dan and Rita returned to Dr. Bladen. Thinking of her own advance directive and the planning she did with her own physician, Rita pressed Dr. Bladen to justify the difference that now existed in treatment choices available to her mother merely because she was in the nursing home instead of the hospital. Dr. Bladen reluctantly agreed that the hospital physicians could and would write the orders he would not write for their mother, but he hastened to add that he liked the confines of the facility’s policies: “I’m very concerned about my legal responsibilities, as doctors should be. These policies protect everybody.”

Mrs. Hawthorne’s children now wondered whether a transfer to another facility would solve the problem. Would other nursing homes honor their mother’s wishes? They had no chance to find out, however, because there were no open beds in the community. They asked next about taking her home. Here the nursing staff, in an effort to discourage them, pointed out the difficulties of caring for Mrs. Hawthorne at home, although the admitting nurse did tell them that they could contact a home health agency or a hospice organization.

Feeling that they had few options, they again consulted the hospital’s ethics committee chairperson for advice and guidance. She told them that most nursing homes are in a difficult position: “They have fewer physicians and registered nurses available than hospitals do and have to rely more on staff with less training, so they have a tendency to look for more certainty in their policies. Besides, they have to worry about absent families, and even sometimes about families that may not have the resident’s best interests at heart. Nursing home residents stay there longer than they stay with us, and nursing home staff aren’t necessarily better at dealing with death than anybody else. What we really need in this state is to do a better job of educating providers and facilities about advance care planning and to provide support for advance care planning services. But you’ll just have to patiently and persistently pursue your case with the nursing home. Maybe our in-house counsel can give you some legal ammunition.”

When Dan and Rita talked with the hospital lawyer, she was eager to discuss First Healthcare Corporation v. Rettinger, [14] a case that had just been decided in the North Carolina Supreme Court. The attorney noted that there were several similarities between the facts of Rettinger and Julia Hawthorne’s circumstances: “In 1990 Mr. Rettinger, who had Parkinson’s disease, entered a nursing home (Hillhaven), and the “Declaration Of A Desire For A Natural Death” that he had executed in 1983 became part of his Hillhaven record. In February 1991, Mr. Rettinger was transferred to the hospital for treatment of pneumonia, and a nasogastric tube was inserted to administer medications. In March, when Mr. Rettinger returned to Hillhaven with the tube in place, his wife asked that it be removed. [15]

“Mr. Rettinger’s attending physician told Mrs. Rettinger that Hillhaven’s policy did not allow the tube to be removed if that act would be likely to cause the patient to starve or dehydrate to death.” [16] That same month Mrs. Rettinger tried unsuccessfully to find another facility for her husband. When she asked to take him home, she was told she could not. [17]

”On June 20, 1991, Hillhaven told Mrs. Rettinger’s attorney that the tube could be removed only under certain statutory conditions-a diagnosis of terminal and incurable illness or persistent vegetative state confirmed by a second physician-or by court order. On June 26 Mrs. Rettinger stopped paying Hillhaven for medical care and services and sought a court order the next day. She won her court order on September 12, with no appeal by Hillhaven. On October 5, the physician’s order was written and the tube removed. Mr. Rettinger died on October to 22. [18]

“The case that went to the North Carolina Supreme Court was a collection action brought by Hillhaven because Mrs. Rettinger refused to pay for her husband’s care from June 1991 until his death in October of that year. Her attorneys argued that she should not have to pay for services expressly rejected by her and by her husband’s advance directive. Hillhaven’s attorneys argued, and the supreme court agreed, that nursing home personnel could not comply with these requests without a diagnosis and order signed by two physicians, which were not in place until after Mrs. Rettinger obtained her court order.” [19]

Dan and Rita were now perplexed. “This sounds like a bad way to handle treatment decisions,” Dan said, fuming. “The Rettingers suffered through many months of very slow procedure-and got a court order to remove the tube-but still had to pay for everything!” Rita asked, “Does this case mean that a nursing home can fashion a limited policy to implement advance directives and that people who fall outside that policy are stuck with it?”

“Well, I can see why you’d think that,” the lawyer admitted. “An awful lot of health care lawyers have apparently come to that to conclusion. [20] It’s wrong, though.” Rettinger does not say that patients who want to step outside the narrow confines of the statutory criteria may not do so. The decision never addressed that question directly. And it is possible to argue both ways. On the one hand, a narrow policy like the one you describe might be viewed as reasonable as long as prospective residents are given prior notice of it. On the other hand, in my view the stronger argument holds that nursing home residents have the right, according to constitutional and common law and even according to the ‘general purpose’ clauses in our statutes, to have their advance directives honored, even when they go beyond the terms of the model forms, as long as there is reason to believe that the directives represent the residents’ wishes. When Mrs. Rettinger obtained the court order in the first place, the judge made just that determination because Mr. Rettinger’s condition did not fit what were then the statutory criteria.

“However, the focus of the supreme court’s decision was not the substance of Hillhaven’s policy but Mrs. Rettinger’s contractual duty to pay for services during the time Hillhaven complied with its policy. In this case the nursing home was worried about getting two physicians’ signatures and a valid order for its nonphysician personnel-not about the grounds for removing Mr. Rettinger’s tube. I wish that hospitals and nursing homes, and their lawyers, would start paying more attention to determining what patients want and honoring their wishes. Communication broke down in Rettinger, and the decision is being used to justify poor communication and unresponsive policy. The best thing I can tell you is to keep the lines of communication open for your mother’s sake.“

After several days of patient, persistent discussion with Dr. Bladen and the nursing home administrator, a compromise was reached with the assistance of the facility’s medical director: Dan and Rita found another physician with privileges at the nursing home who was willing to write a DNR order and remove the nasogastric tube, and the nursing home authorities permitted him to do so. Julia Hawthorne died peacefully several days later.

The Lessons Learned

This process of negotiation made Dan and Rita understand that it is appropriate for institutions to take great care in ensuring that those who would speak for a patient are acting out of good knowledge and in good faith. They had to think through their reasoning very carefully in order to convince Dr. Bladen and the nursing home staff. They also had to recognize that, since their mother left no written advance directive, this process of thorough discussion and negotiation protected her rights and interests. They simply wished it had not been so hard.

The thoughtful persistence of Dan and Rita in advocating for their mother and questioning the wisdom of others was a lesson to providers as well. Dr. Bladen learned to distinguish his personal preferences about patients’ treatment from his professional responsibility to respond to requests from patients and their families-and to clarify the difference with his patients. He also learned that institutional policy is no substitute for informed planning of treatment with patients.

These distinctions are no small matter, given Dr. Bladen’s powerful role in presenting and describing the options available to his patients. The treatment option that is medically, morally, and legally acceptable but personally objectionable to the physician must be identified as such. [21] Whether the patient wants to receive or refuse treatment, the physician who does not wish to comply must try to transfer the patient to a physician who will. [22] Both proceeding without consent and abandoning the patient are choices that are neither moral nor legal. Like Dr. Bladen, many practitioners would understandably prefer to avoid difficult or controversial decisions by deferring to a policy. But they owe more to their patients, including full and frank discussions about the range of recommendations and options available through advance care planning.

Dr. Bladen decided that from now on he will help transfer a patient to the care of another physician when he, in good conscience, cannot comply with the patient’s wishes. Wondering how to place advance care planning higher on his list of objectives for good patient care, he called the North Carolina Medical Society for information and contacts about treatment decisions at the end of life. He even scheduled an appointment with the facility’s medical director to talk about the need for a more responsive policy.

In the best of all worlds, Dan and Rita would have contacted Dr. Martin when he returned from vacation. After caring for Mrs. Hawthorne for forty years, he failed her in her final days. Evidence of his prior conversation with her and his knowledge of her preferences could have helped persuade the nursing home authorities that her children’s wishes reflected her own. Moreover, he might well have had a duty to initiate more than one conversation with Mrs. Hawthorne on this subject, and perhaps to try to encourage her to write a more explicit advance directive.

The nursing home’s administrator and its lawyer learned that the policy of demanding statutory advance directive forms before any withdrawal of treatment is poor practice, poor ethics, and bad law. Even after the Rettinger decision, such limitations may protect the institution from one set of risks while exposing it to others, including the risk of overtreatment, accusations of self-interested maximization of income, and even charges of battery. [23]

It may not always be possible to rely on the word of family members. Indeed, the nursing home administrator remained convinced that many family members are self-serving in their own way, but he has now acknowledged an obligation to investigate and weigh the evidence in each instance, instead of relying on a rigid rule. Impressed with the assistance Mrs. Hawthorne’s children received from the hospital, the administrator contacted the chairperson of the hospital’s ethics committee to ask for joint continuing education on end-of-life decision making and help in setting up an ethics committee for his facility. He also asked the facility’s medical director to review the existing policy. And realizing that the next case is just around the corner, the administrator contacted his own professional organization, the North Carolina Health Care Facilities Association, for further information and advice.

Minimizing Risks and Maximizing Rights

Advance directives of all types provide important information and guidance for those who will honor the wishes of the individuals who write them. Health care providers are often misinformed about patients’ rights [24] and may be tempted to disregard an advance directive that does not look like what is in the statutes, or one that looks ׏right” but lacks some of the legal formalities required by the statutes. If an advance directive is to be thrown out because it is not “perfect,” then almost any evidence about the choices, wishes, and values of the person who wrote the directive also will have to be discarded as lacking “proof.” However, a patient’s family, physicians, and other caregivers must-and routinely do-rely on this kind of evidence (such as Mrs. Hawthorne’s expired DNR order) to make good decisions on the patient’s behalf, and health care institutions and their attorneys routinely-and rightly-recognize the legal and moral validity of this evidence.

When health care decisions must be made for a patient by someone else, we must look at what this patient said he or she wanted. If we do not know specifically, we have to figure out what this person would have wanted. And if we do not have enough information to determine that, we must ask what would be in this patient’s best interests. Advance directives-of all kinds-provide the best kinds of evidence. In many cases they tell us precisely what the patient wanted; in other cases they may help us figure out what the patient would have wanted. (See Statutory Advance Directive Forms.)

Persons who are highly concerned about their health care choices-for example, those who have strong preferences, those whose health problems have caused them to plan ahead, or those who have seen family or friends experience difficulty in exercising their decision-making rights-should know two things. First, they have the right to express choices and preferences that are not included in the statutory model forms. Second, they should supplement their written forms with extensive discussion of the values and issues underlying their choices.

People who have such concerns should focus on several kinds of information that will help others understand their wishes and make decisions based on them: (1) the goals of treatment-that is, what treatments need to be able to accomplish in order for them to be “worth it” for the person; (2) desired and unwanted states of health and functioning-that is, the state of health and activity and the kind of life the person hopes for, is willing to live with, or views as not worth it; and (3) the person’s values, life activities, and experiences of importance. [25] Health care providers and others faced with implementing advance directives should encourage advance care planning, promote the use of advance directives, and recognize the broad range of evidence that can provide legally and morally legitimate guidance for health care decision making.

Nonetheless, it is true that advance directive statutes in most states, including North Carolina, state that the physician “may,” not “must,” rely on a statutory form. The reason is that these laws were written to provide physicians with a shield against the accusation “You let my loved one die!” But families are becoming increasingly likely to make a different accusation—“You prolonged my loved one’s suffering!” [26] So that neither accusation has to be made, patients and physicians need to communicate about these decisions, and institutional and state policies need to encourage the habit of such communication.

To some extent, this planning and discussion also must be communicated outside the patient-physician relationship. If an advance directive is to be honored, people must know that it exists and what it says and be willing to help implement it-not just the physician, but also family, close friends, and other providers.

At present, few North Carolinians can realistically expect that their legitimate wishes not to be given unwanted treatment will be honored. Their wishes, even those expressed in advance directives, are often ignored because their choices and circumstances do not fit narrowly drawn statutory categories and are therefore mistakenly thought by administrators and lawyers to be invalid. In addition, many health care providers and institutions treat aggressively out of misplaced and exaggerated fears of legal liability.

North Carolinians want to know that their legitimate choices about health care will be honored by physicians and health care institutions. Constitutional and common law legitimizes those choices; state law makes it possible to honor them. But policy and practice must change throughout the state to make it likely. The many personal and social costs of high-technology treatments at the end of life have become as great a concern in North Carolina as they are everywhere. One way to address that problem is to minimize the delivery of unwanted treatment and focus on advance care planning.

There is a Julia Hawthorne in nearly every family, with important rights and interests in making health care decisions, especially at the end of life. It is vital that all state governmental entities with any role in interpreting or applying the law of health care decision making do so correctly, recognizing its breadth and purpose so that, when the time comes, the health care decisions of all the Julia Hawthornes-and of everyone else as well-can be appropriately honored.

1. Part One appeared in Popular Government 62 (Spring 1997): 2-11.

2. N.C. Gen. Stat. § 90-322 (hereinafter the General Statutes will be cited as G.S.). See also Part One of this article.

3. See the discussions of this statute and common medical practice in Part One.

4. “Comfort care” is often mentioned in literature regarding the end of life, but it is rarely examined. For an exception, see C. Glenn Pickard, Jr., “Beyond the No-Code Order,” North Carolina Medical Journal 54, no. 8 (Aug. 1993): 383-85.

5. See N.C. Admin. Code tit. 32H (Emergency Medical Services Advanced Life Support). Of course, the fact that a patient has an advance directive does not necessarily mean that a DNR order is required. The DNR order implements the advance directive that refuses such treatment and thus reflects-and must match-the patient’s wishes. Patients who have written advance directives but retain decisional capacity may want DNR orders-or they may not want such an order until the advance directive is in effect.

6. G.S. 143-507.

7. The apocryphal anecdote has it that a hospice patient’s family panicked at 3:00 a.m. and called 911. Then they immediately called the hospice nurse and asked, “What can we do now that we’ve made this awful mistake?” The hospice nurse beat EMS personnel to the house and physically barred the door, denying them entry. Shortly thereafter, work was begun on the out-of-hospital DNR order discussed later. See Debbie A. Travers and Greg Mears, “Physicians’ Experience with Prehospital Do-Not-Resuscitate Orders in North Carolina,” Prehospital and Disaster Medicine 11 (April-June 1996): 91-100.

8. An informal opinion from the North Carolina Attorney General’s Office concluded that the out-of-hospital DNR order, if properly executed, should allow EMS personnel to withhold CPR without incurring liability. See David M. Parker’s letter to Julian D. Bobbitt, Jr., Dec. 14, 1990.

9. G.S. 90-321 and -322 (1977).

10. David M. Parker’s letter to Julian D. Bobbitt, Jr., Dec. 14, 1990. For a description and discussion, see Travers and Mears, “Physicians’ Experience.”

11. Call the North Carolina Medical Society for more information [(919) 833-3836 or (800) 722-1350].

12. G.S. 90-321 and -322; 32A-15 through -26. See also Part One of this article.

13. G.S. 90-321 and -322. It should be noted that the policy neglected the additional choices available under the Health Care Powers of Attorney Act, G.S. 32A-15 through -26.

14. First Healthcare Corp. v. Rettinger, 342 N.C. 886, 467 S.E.2d 243 (1996), rev’g 118 N.C. App. 600 (1995), 456 S.E.2d 347 (1996), rev’g No. 230A95-Forsyth (N.C. Jan. 19, 1994).

15. Mrs. Rettinger amended Hillhaven’s form, on which she had requested no resuscitation, to ask that no nasogastric tube be used; the form was returned to her as invalid. Rettinger, 118 N.C. App. at 601, 456 S.E.2d at 347-48.

16. Rettinger, 118 N.C. App. at 601, 456 S.E.2d at 347-48.

17. Mrs. Rettinger said that she was told she could not take her husband home. Rettinger, 118 N.C. App. at 601, 456 S.E.2d at 347-48.

18. Rettinger, 118 N.C. App. at 602, 456 S.E.2d at 348-49.

19. Rettinger, 118 N.C. App. at 602, 456 S.E.2d at 348-49. Under nursing home regulations, each resident must be seen by his or her physician only once every thirty days. Perhaps that was why Mr. Rettinger’s feeding tube was not removed until nearly a month after the court order was issued. Both the judicial and the administrative delays in this case were regrettable.

20. Christine Nero, “First Health Care v. Rettinger: The Impact of a Living Will on Payment Obligations in the Long-Term Care Setting,” Prognosis (May 1996): 14-16; Frederick A. Burke, “Dying by the Rules: Legal Decisions at the End of Life,” North Carolina Medical Journal 57, no. 6 (Nov.-Dec. 1996): 386-89.

21. Nancy M. P. King, Making Sense of Advance Directives, rev. ed. (Washington, D.C.: Georgetown University Press, 1996); 42 U.S.C. §§ 1395 et seq. (1990). Dr. Bladen’s comments about removal of nasogastric tubes and starvation are a good example. Many people still mistakenly regard withholding or withdrawing artificial nutrition and hydration as the equivalent of committing the patient to dying of hunger or thirst. But in reality, appropriate comfort care can ensure a minimum of discomfort from the cessation of these treatments (see Pickard, “Beyond the No-Code Order”), and death is attributable to the underlying condition that renders normal eating and drinking impossible for the patient.

22. Although no North Carolina statute specifically mandates this practice, it follows from state statutes forbidding treatment without consent and abandonment of a patient. It also is addressed by the Patient Self-Determination Act. See Part One of this article, note 9 and accompanying text.

23. The law provides that continuing unwanted treatment is a battery, as is any unwanted physical contact. The requirement of informed consent to medical treatment is related to the law prohibiting battery. See King, Making Sense, especially the discussion in chapter 2.

24. See the discussion in Part One of the constitutional, common, and statutory law recognizing the patient’s broad right to make his or her own health care decisions.

25. Several excellent model advance directives, in particular a new one available through the American Association of Retired Persons (AARP), emphasize the goals of treatment. A document called a “values history” also can help clarify what the writer of the directive believes important. See King, Making Sense, especially chapters 1 and 5.

26. King, Making Sense, especially chapters 1 and 5. See also the discussion of the legal grounding for this accusation in Part One.

The “Declaration,” below, is North Carolina’s “living will” type of directive, and the “Health Care Power of Attorney” is the state’s form for appointing a surrogate decision maker. The latter includes suggested language (in boldface type) that is not in the statutory form but could be added by persons who can name a health care agent and wish to refuse treatment in a broader range of circumstances than those currently listed in the statute. Someone who is not able to name an agent could amend a Declaration or attach an addendum to it using similar language, in order to make clear the desire to refuse treatment under similarly broad circumstances.

Declaration Of A Desire For A Natural Death

I, ______________________, being of sound mind, desire that, as specified below, my life not be prolonged by extraordinary means or by artificial nutrition or hydration if my condition is determined to be terminal and incurable or if I am diagnosed as being in a persistent vegetative state. I am aware and understand that this writing authorizes a physician to withhold or discontinue extraordinary means or artificial nutrition or hydration, in accordance with my specifications set forth below:

(Initial any of the following, as desired):

__ If my condition is determined to be terminal and incurable, I authorize the following:

__ My physician may withhold or discontinue extraordinary means only.

__ In addition to withholding or discontinuing extraordinary means if such means are necessary, my physician may withhold or discontinue either artificial nutrition or hydration, or both.

__ If my physician determines that I am in a persistent vegetative state, I authorize the following:

__ My physician may withhold or discontinue extraordinary means only.

__ In addition to withholding or discontinuing extraordinary means if such means are necessary, my physician may withhold or discontinue either artificial nutrition or hydration, or both.

This the ________ day of ________________

Signature _____________________________

I hereby state that the declarant, ______________________, being of sound mind signed the above declaration in my presence and that I am not related to the declarant by blood or marriage and that I do not know or have a reasonable expectation that I would be entitled to any portion of the estate of the declarant under any existing will or codicil of the declarant or as an heir under the Intestate Succession Act if the declarant died on this date without a will. I also state that I am not the declarant’s attending physician or an employee of the declarant’s attending physician, or an employee of a health facility in which the declarant is a patient or an employee of a nursing home or any group-care home where the declarant resides. I further state that I do not now have any claim against the declarant.

Witness _________________________________________

Witness _________________________________________

The clerk or the assistant clerk, or a notary public may, upon proper proof, certify the declaration as follows:

‘Certificate’

I, ________________________, Clerk (Assistant Clerk) of Superior Court or Notary Public (circle one as appropriate) for _________________ County hereby certify that ___________________________, the declarant, appeared before me and swore to me and to the witnesses in my presence that this instrument is his Declaration Of A Desire For A Natural Death, and that he had willingly and voluntarily made and executed it as his free act and deed for the purposes expressed in it. I further certify that _______________ and _____________, witnesses, appeared before me and swore that they witnessed __________________, declarant, sign the attached declaration, believing him to be of sound mind; and also swore that at the time they witnessed the declaration (i) they were not related within the third degree to the declarant or to the declarant’s spouse, and (ii) they did not know nor have a reasonable expectation that they would be entitled to any portion of the estate of the declarant upon the declarant’s death under any will of the declarant or codicil thereto then existing or under the Intestate Succession Act as it provides at that time, and (iii) they were not a physician attending the declarant or an employee of an attending physician, or an employee of a health facility in which the declarant was a patient or an employee of a nursing home or any group-care home in which the declarant resided, and (iv) they did not have a claim against the declarant. I further certify that I am satisfied as to the genuineness and due execution of the declaration.

This the _____ day of ___________________

____________________________________

Clerk (Assistant Clerk) of Superior Court or

Notary Public (circle one as appropriate) for

the County of ______________________

Health Care Power of Attorney

Use of this form in the creation of a health care power of attorney is lawful and is authorized pursuant to North Carolina law. However, use of this form is an optional and nonexclusive method for creating a health care power of attorney and North Carolina law does not bar the use of any other or different form of power of attorney for health care that meets the statutory requirements.

1. Designation of health care agent.

I, _________________, being of sound mind, hereby appoint

Name: _____________________________________________

Home Address: ______________________________________

Home Telephone Number ______________________________

Work Telephone Number ______________________________

as my health care attorney-in-fact (herein referred to as my “health care agent”) to act for me and in my name (in any way I could act in person) to make health care decisions for me as authorized in this document.

If the person named as my health care agent is not reasonably available or is unable or unwilling to act as my agent, then I appoint the following persons (each to act alone and successively, in the order named), to serve in that capacity: (Optional)

A. Name: _____________________________________________

Home Address: ________________________________________

Home Telephone Number ________________________________

Work Telephone Number ________________________________

B. Name: _____________________________________________

Home Address: ________________________________________

Home Telephone Number ________________________________

Work Telephone Number ________________________________

Each successor health care agent designated shall be vested with the same power and duties as if originally named as my health care agent.

2. Effectiveness of appointment.

(Notice: This health care power of attorney may be revoked by you at any time in any manner by which you are able to communicate your intent to revoke to your health care agent and your attending physician.)

Absent revocation, the authority granted in this document shall become effective when and if the physician or physicians designated below determine that I lack sufficient understanding or capacity to make or communicate decisions relating to my health care and will continue in effect during my incapacity, until my death. This determination shall be made by the following physician or physicians (You may include here a designation of your choice, including your attending physician, or any other physician. You may also name two or more physicians, if desired, both of whom must make this determination before the authority granted to the health care agent becomes effective.):

__________________________________________________

__________________________________________________

3. General statement of authority granted.

Except as indicated in section 4 below, I hereby grant to my health care agent named above full power and authority to make health care decisions on my behalf, including, but not limited to, the following:

A. To request, review, and receive any information, verbal or written, regarding my physical or mental health, including, but not limited to, medical and hospital records, and to consent to the disclosure of this information;

B. To employ or discharge my health care providers;

C. To consent to and authorize my admission to and discharge from a hospital, nursing or convalescent home, or other institution;

D. To give consent for, to withdraw consent for, or to withhold consent for, X ray, anesthesia, medication, surgery, and all other diagnostic and treatment procedures ordered by or under the authorization of a licensed physician, dentist, or podiatrist. This authorization specifically includes the power to consent to measures for relief of pain.

E. To authorize the withholding or withdrawal of life-sustaining procedures when and if my physician determines that I am terminally ill, permanently in a coma, suffer severe dementia, or am in a persistent vegetative state. [“To authorize the withholding of or withdrawal of life-sustaining procedures when my physical or cognitive state is compromised to the point where I cannot interact with my surroundings or enjoy my family or friends.”]Life-sustaining procedures are those forms of medical care that only serve to artificially prolong the dying process and may include mechanical ventilation, dialysis, antibiotics, artificial nutrition and hydration, and other forms of medical treatment which sustain, restore or supplant vital bodily functions. Life-sustaining procedures do not include care necessary to provide comfort or alleviate pain.

I DESIRE THAT MY LIFE NOT BE PROLONGED BY LIFE-SUSTAINING PROCEDURES IF I AM TERMINALLY ILL, PERMANENTLY IN A COMA, SUFFER SEVERE DEMENTIA, OR AM IN A PERSISTENT VEGETATIVE STATE.

F. To exercise any right I may have to make a disposition of any part or all of my body for medical purposes, to donate my organs, to authorize an autopsy, and to direct the disposition of my remains.

G. To take any lawful actions that may be necessary to carry out these decisions, including the granting of releases of liability to medical providers.

4. Special provisions and limitations.

(Notice: The above grant of power is intended to be as broad as possible so that your health care agent will have authority to make any decisions you could make to obtain or terminate any type of health care. If you wish to limit the scope of your health care agent’s powers, you may do so in this section.)

In exercising the authority to make health care decisions on my behalf, the authority of my health care agent is subject to the following special provisions and limitations (Here you may include any specific limitations you deem appropriate such as: your own definition of when life-sustaining treatment should be withheld or discontinued, or instructions to refuse any specific types of treatment that are inconsistent with your religious beliefs, or unacceptable to you for any other reason.):

[“I wish my agent to exercise the authority to withhold or withdraw life support in any situation in which, based on his knowledge of me and previous conversations with me, he believes I would make that decision. I intend this to be a broad delegation of power. The delegation may be exercised as a result of chronic, degenerative, or other conditions and is not limited to terminal illness, coma, severe dementia, or persistent vegetative state.”]

5. Guardianship provision.

If it becomes necessary for a court to appoint a guardian of my person, I nominate my health care agent acting under this document to be the guardian of my person, to serve without bond or security.

6. Reliance of third parties on health care agent.

A. No person who relies in good faith upon the authority of or any representations by my health care agent shall be liable to me, my estate, my heirs, successors, assigns, or personal representatives, for actions or omissions by my health care agent.

B. The powers conferred on my health care agent by this document may be exercised by my health care agent alone, and my health care agent’s signature or act under the authority granted in this document may be accepted by persons as fully authorized by me and with the same force and effect as if I were personally present, competent, and acting on my own behalf. All acts performed in good faith by my health care agent pursuant to this power of attorney are done with my consent and shall have the same validity and effect as if I were present and exercised the powers myself, and shall inure to the benefit of and bind me, my estate, my heirs, successors, assigns, and personal representatives. The authority of my health care agent pursuant to this power of attorney shall be superior to and binding upon my family, relatives, friends, and others.

7. Miscellaneous provisions.

A. I revoke any prior health care power of attorney.

B. My health care agent shall be entitled to sign, execute, deliver, and acknowledge any contract or other document that may be necessary, desirable, convenient, or proper in order to exercise and carry out any of the powers described in this document and to incur reasonable costs on my behalf incident to the exercise of these powers; provided, however, that except as shall be necessary in order to exercise the powers described in this document relating to my health care, my health care agent shall not have any authority over my property or financial affairs.

C. My health care agent and my health care agent’s estate, heirs, successors, and assigns are hereby released and forever discharged by me, my estate, my heirs, successors, and assigns and personal representatives from all liability and from all claims or demands of all kinds arising out of the acts or omissions of my health care agent pursuant to this document, except for willful misconduct or gross negligence.

D. No act or omission of my health care agent, or of any other person, institution, or facility acting in good faith in reliance on the authority of my health care agent pursuant to this health care power of attorney shall be considered suicide, nor the cause of my death for any civil or criminal purposes, nor shall it be considered unprofessional conduct or as lack of professional competence. Any person, institution, or facility against whom criminal or civil liability is asserted because of conduct authorized by this health care power of attorney may interpose this document as a defense.

8. Signature of principal.

By signing here, I indicate that I am mentally alert and competent, fully informed as to the contents of this document, and understand the full import of this grant of powers to my health care agent.
___________________________________________________
Signature _______________________________
Date

9. Signatures of witnesses. I hereby state that the Principal _______________________, being of sound mind, signed the foregoing health care power of attorney in my presence, and that I am not related to the principal by blood or marriage, and I would not be entitled to any portion of the estate of the principal under any existing will or codicil of the principal or as an heir under the Intestate Succession Act, if the principal died on this date without a will. I also state that I am not the principal’s attending physician, nor an employee of the principal’s attending physician, nor an employee of the health facility in which the principal is a patient, nor an employee of a nursing home or any group care home where the principal resides. I further state that I do not have any claim against the principal.

Witness:____________________ Date: _________________

Witness:____________________ Date: _________________

STATE OF NORTH CAROLINA

COUNTY OF _____________________

CERTIFICATE

I, ________________ a Notary Public for __________________ County, North Carolina, hereby certify that ________________ appeared before me and swore to me and to the witnesses in my presence that this instrument is a health care power of attorney, and that he/she willingly and voluntarily made and executed it as his/her free act and deed for the purposes expressed in it.

I further certify that _______________ and _________________, witnesses, appeared before me and swore that they witnessed ___________________ sign the attached health care power of attorney, believing him/her to be of sound mind; and also swore that at the time they witnessed the signing (i) they were not related within the third degree to him/her or his/her spouse, and (ii) they did not know nor have a reasonable expectation that they would be entitled to any portion of his/her estate upon his/her death under any will or codicil thereto then existing or under the Intestate Succession Act as it provided at that time, and (iii) they were not a physician attending him/her, nor an employee of an attending physician, nor an employee of a health facility in which he/she was a patient, nor an employee of a nursing home or any group-care home in which he/she resided, and (iv) they did not have a claim against him/her. I further certify that I am satisfied as to the genuineness and due execution of the instrument.

This the _________ day of ___________________, 19 ___

__________________________________________
Notary Public

My Commission Expires:

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