Module 10: Advance Directives
Upon completion of this module, the resident should be able to:
- Define advance care planning and explain its importance.
- Describe the steps of advance care planning.
- Utilize a systematic process to establish treatment goals and related interventions.
- Describe the role of patient, proxy, clinicians and others in the process of advance care planning.
- Describe different types of advance directives and identify their respective advantages and disadvantages.
- Describe critical legal and ethical milestones in the evolution of advance care planning and advance directives.
Module: 10 / Advance Care Planning and Advance Directives
Ms. D is a 52-year old woman with diabetes, hypertension, and, more recently, renal failure. How would you evaluate the likely course of Ms. D’s illnesses? What are the options for treating and caring for Ms. D, in light of her prognosis? How would you communicate your evaluation and these options to Ms. D? What steps would you recommend that Ms. D take in light of her likely prognosis?
Mr. F is a 32-year old man with advanced testicular cancer. Would it be appropriate to advise him to execute advance directives soon? If so, why? If not, why not?
Ms. E is a 82-year old woman with advanced, metastatic cancer of bladder. She is hospitalized in an intensive care unit due to sepsis. Only on an intermittent basis does she appear to have the capacity to make decisions. When asked about her preferences for ongoing treatment, she insists that everything be done to prolong her life and has refused a recommended DNR order. She has executed a living will, however, that stipulates that nothing be done to prolong her life in the event that she is diagnosed with a terminal illness. How should her treating physicians proceed?
Karen Ann Quinlan. Nancy Cruzan. Terry Schiavo. The names of these individuals – all relatively young women – mark milestones in the still troubled history of advance care planning and advance directives in the United States. Through unexpected mishaps and accidents, all were eventually diagnosed as “living” in a persistent vegetative state. None had executed a living will. None had officially designated a loved one or friend as her preferred decision maker, in the seemingly unlikely event that she lost the capacity to make decisions for herself. None had engaged in a process of advance care planning with her physician prior to the mishap or accident that eventually robbed her of her capacity.
In re Quinlan, 1976: One evening in April 1975, a young New Jersey woman, Karen Ann Quinlan, joined some friends for drinks at a restaurant. Feeling unwell after dinner, she returned home, went to bed, and was later found by her roommates, in bed and not breathing. Emergency medical technicians were called, performed CPR on Miss Quinlan, and transported her to a local hospital, where she was admitted, in a coma. She was placed on a respirator in the intensive care unit of that hospital; by late May, it was clear that she had sustained severe brain damage. After careful evaluation, consulting neurologists determined that Ms. Quinlan had lapsed into a persistent vegetative state: although her brain stem was intact, she had lost the cortical basis for conscious awareness, cognition, and other higher brain functions. In July, her parents, devout Roman Catholics, began to speak with their parish priest about their concerns about continuing life-sustaining treatment. They decided to bring suit against Miss Quinlan’s physicians and the hospital to compel them to withdraw treatment and permit Ms. Quinlan to die. At the time, it was the policy of the American Medical Association that such a withdrawal of treatment would be tantamount to euthanasia. After losing their case at the trial court level, the Quinlans appealed to the New Jersey Supreme Court. In his opinion for the state’s highest court, Chief Justice Richard J. Hughes articulated the principle that an individual’s right to privacy applies to health care decisions and that, on the basis of that right, an individual – or his/her guardian – may refuse unwanted treatment. He added, too, that the state’s interest in preserving life weakens and the individual’s right to privacy grows as medical interventions become more invasive and the prognosis for recovery diminishes. Finally, the chief justice stated that an individual’s right to privacy can be asserted by a guardian if that individual lacks the capacity to do so him or herself.
In May 1976, Miss Quinlan was removed from the respirator, but she continued to breathe on her own. Fed by a tube, she was transferred from the hospital to a nursing home, where she continued to live until June 11, 1985. The legal controversy surrounding the withdrawal of her respirator yielded a ruling with jurisdiction in New Jersey only – yet the full impact of that controversy and the court’s ruling was much broader.
The California Natural Death Act, 1976: In the aftermath of the Quinlan case, California became the first state to enact legislation permitting individuals to execute living wills. The concept of such a document – in which an individual stipulates the treatments he or she would want and not want in the context of terminal illness or permanent unconsciousness – was first proposed in 1967, at a meeting of the Euthanasia Society. By 1992, all fifty states and the District of Columbia had enacted laws recognizing advance directives.
The President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Deciding to Forego Life-Sustaining Treatment, 1983. In 1980, the U.S. Congress established a President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. In its first report, the Commission explored the definition of death and endorsed the “whole-brain-oriented” definition. In 1983, spurred by the Quinlan case and other ongoing controversies in the care and treatment of patient’s with terminal illness or permanent unconsciousness, the Commission issued its second report, which focused on life-sustaining treatments. In this report, the Commission affirmed the evolving principle that decisions concerning life-sustaining treatment belong to patients with capacity, exercising voluntary, informed choice. In its definition of such treatments, it included respirators, antibiotics, dialysis, blood transfusions, and artificial nutrition and hydration, and argued that a careful calculus of the benefits, harms, and burdens of such treatments should be employed in deciding about their use or continuance. The Commission also underscored the importance and difference between two standards for the surrogate decision making, i.e., the substituted judgment standard (whereby the patient’s own preferences and values, whether expressed orally or in writing, are used to make decisions) and the best interests standard (whereby the clinical features of any given case are used to decide what course of treatment would optimize benefits and minimize harms, in the absence of any evidence of patient preference). Finally, the Commission acknowledged that there is a presumption in favor of life-sustaining treatment, but that there are constraints on patient autonomy, particularly when patient choices violate the professional conscience or judgment of physicians and/or exceed limits to permit the more effective use of medical resources.
Cruzan v. Director, Missouri Department of Health, 1990: On a winter’s night in January 1983, Nancy Cruzan lost control of her car and, upon impact, was thrown from the vehicle. She was discovered lying face down in a ditch without detectable respiratory or cardiac function. Paramedics restored her breathing and heartbeat and she was transported to hospital in an unconscious state. It was later estimated that she was deprived of oxygen from 12 to 14 minutes. For the next three weeks, Ms. Cruzan remained in a coma and then progressed to an unconscious state that permitted some oral ingestion of nutrition. To facilitate feeding, a gastrostomy tube was implanted with the consent of her husband. With the failure of rehabilitative efforts, it soon became clear that Ms. Cruzan was in a persistent vegetative state. Her parents sought to have artificial nutrition and hydration terminated and to permit their daughter to die. Hospital employees refused to honor their request in the absence of court approval. Upon petition by her parents, a state trial court in Missouri authorized the termination of life-sustaining treatment, and based its decision, in part, on evidence that such a termination would be in accord with Ms. Cruzan’s preferences, as expressed in conversations with a friend. The Supreme Court of Missouri reversed the trial court’s decision, in part, because it viewed the evidence of Ms. Cruzan’s preferences as unreliable. On appeal to the U.S. Supreme Court, the nation’s highest court, for the first time in its history, affirmed the right of patients or their surrogates to refuse unwanted medical treatment. The court, however, left it to the states to determine standards for evidence of a patient’s wishes in any particular case and thereby sanctioned the state of Missouri’s insistence on “clear and convincing” evidence.
The Patient Self-Determination Act, 1991. In the wake of the Cruzan decision, the U.S. Congress enacted legislation sponsored by Missouri senator John Danforth with the aim of requiring hospitals and other health care organizations receiving federal funds to inform patients of their right to execute advance directives.
Advance Care Planning Defined: Advance care planning is the process of planning for future medical care. In this process, a physician and patient explore and document the latter’s values and preferences for treatment and care; discuss ways in which the patient’s health or illness might change (especially if the patient has already been diagnosed with a serious or chronic illness); determine current – and envision possible future – goals of care; and identify and determine the individual or individuals whom the patient would entrust with the responsibility of decision making, in the event that the patient suffers a loss of capacity. Ideally, the outcome of a robust process of advance care planning is the patient’s execution of advance directives – i.e., a living will, a durable power of attorney for health care decision making, or both. Effective, well conducted advance care planning can yield a variety of benefits for patients and their physicians. It can help to: build trust between patients and their physicians; reduce the uncertainty that often bedevils patients and their physicians; avoid confusion or conflict, particularly in situations of serious or terminal illness; and permit peace of mind.
Five Steps for Successful Advance Care Planning: There are five (5) steps for successful advance care planning: (1) introduce the topic; (2) engage in structured discussions; (3) document patient preferences and execute advance directives; (4) review and update documented preferences and directives; (5) apply the directives when the need arises. Some specific guidelines for each of the five steps include:
Step 1: introduce the topic
- Be straightforward and routine in approaching the topic with the patient.
- Determine the patient’s familiarity and comfort with planning ahead for future medical care.
- Explain what the process entails.
- Determine, early on, if the patient has a significant other or friend to whom the patient would want physicians to turn for help in making decisions, should the patient ever lose decision making capacity.
Step 2: engage in structured discussions
- In the ideal situation, advance care planning would occur in the presence of designated proxy decision maker(s). The proxy decision maker is that individual to whom the patient wishes to entrust a significant moral responsibility, i.e., that of speaking on behalf of the patient. The designated individual must be able (i.e., should possess capacity) and willing to assume this responsibility.
- The physician should describe clinical scenarios and the options for care in each – again, particularly, if the patient has already been diagnosed with a serious or chronic illness. This is an ideal opportunity for patient (and proxy) education – for defining key medical terms and explaining the possible benefits, harms, and burdens of treatment.
- Elicit the patient’s values and preferences for treatment and care, and place these in the context of the various scenarios. It is helpful, here, to ask about past experiences, to describe situations in which they think they would find it tolerable or intolerable to function or live.
Step 3: document patient preferences; execute advance directives
- Review the types of advance directive. Living wills and durable powers of attorney for health care are the two principal types of advance directives. There are as well treatment-specific advance directives, including Do-Not-Resuscitate Orders, etc.
- Recommend statutory documents, i.e., those sanctioned through jurisdiction-specific legislation – which means physicians should make themselves aware of the law of the state or states in which they are licensed to practice.
- Once executed and signed, advance directives should be entered into the patient’s medical record.
Step 4: review and update the directive
- Physicians should follow up periodically with their patients on the “content” of their advance directives, particularly if that patient is being treated for a serious or chronic illness.
- Major life events—for example, divorce, marriage, death, birth—often prompt changes in the values and preferences that shape a patient’s advance directives. These changes should be explored and documented.
Step 5: apply directives to actual circumstances
- The first challenge is to determine whether an advance directive is applicable. Advance directives are only applicable if and when a patient loses the capacity to make decisions for himself. If the patient possesses capacity, it does not matter what is or is not in an advance directive.
- Due to certain limitations, living wills may require careful reading and interpretation in order to obtain guidance – for surrogates/proxies and treating physicians.
- In the event of disagreements (e.g., between physicians and proxies or within the health care team), ethics committees or ethics consultation teams are required to be in place and available in Joint Commission-accredited hospitals. Most are experienced and skills in resolving conflicts of advance directives.
A Systematic Process to Establish Treatment Goals and Related Interventions: One of the most important steps in advance care planning is defining the goals of treatment and care. In taking this step, physicians should begin with the facts, i.e., the medical and social facts relevant to the particular patient. The medical facts – i.e., the patient’s diagnosis and prognosis, with and without therapeutic intervention – will help to clarify the possible goals of care. The goal of care and treatment may be restoration and cure; stabilization of functioning; or, preparation for death with dignity and comfort.
Once the appropriate goal of care and treatment has been determined and agreed upon by physician and patient, it is possible, then, to evaluate a proposed intervention in terms of its (a) effectiveness, (b) benefits, and (c) its burdens. Effectiveness is an objective clinical determination that a physician should make in light of evidence. Benefits are more subjective in nature and depend, in part, on patient preferences, values, and life plans. Burdens are both objective and subjective in nature and include consideration of age, quality of life factors, economics, caregiver variables, and the like. Especially in the context of serious or terminal illness, it is critical that physicians seek to clarify the goals of therapy and explicitly evaluate interventions in light of those goals.
The Outcomes of Advance Care Planning – Advance Directives: Every state and the District of Columbia recognize the two principal types of advance directives – i.e., living wills and proxy designations. There is, however, considerable variation, from jurisdiction to jurisdiction, in terminology, scope of decision making, restrictions, and required formalities.
In the strict sense, there are two categories of advance directives, treatment directives and proxy designations. Treatment directives include: living wills, which (a) are formal legal documents and (b) tend to express what a patient does not want in treatment, usually in the context of terminal illness or permanent unconsciousness; medical care directives, which are more generic in nature than living wills and identify what the patient does want in the way of treatment and care, in language that is usually more concrete and complete; CPR orders and directives, do-not-intubate orders and other modality-specific orders, which apply to the specified modality only; and oral (not written) directives. Proxy designations come in two forms: (1) durable powers of attorney may be broader in scope and may apply not only to health care decision making but also to other functions, e.g., financial affairs; and (2) health care proxy designations, which are narrow in scope and apply only to health care decision making.
Advantages and Disadvantages of Living Wills and Health Care Proxies
Health Care Proxies
In light of these advantages and disadvantages, the greatest security – for physicians and patients – is to be found in a combined directive: that is, patients should be encouraged to execute both a living will and a durable power of attorney for health care – such that the living will can provide guidance to the proxy.
The conflicts over the treatment of Karen Quinlan and Nancy Cruzan eventually yielded legal decisions affirming the right of patients to refuse unwanted medical treatment – their rights, that is, to privacy and self-determination in health care decisions and treatment. In the realm of bio- or clinical ethics, the parallel principle is the principle of respect for autonomy. In deference to that principle, physicians are duty-bound or obligated to provide or withhold treatment, in accordance with the expressed preferences and values of the patient – within certain limits. It is true that treating the patient in this fashion would also be in deference to the older Hippocratic principles of beneficence and non-maleficence: that treating patients in ways that are consistent with their wishes is a way of achieving their broader goods and interests and that to do otherwise is, in effect to harm them.
Moreover, empirical studies suggest that when physicians effectively engage patients in health care decision making, treatment and care tend to yield better outcomes – a finding that offers evidence for a consequentialist justification of advance care planning and advance directives.
Mr. L is a 73-year old single man with advanced metastatic prostate cancer; he has been hospitalized due to respiratory distress and hypotension. He has executed a living will that stipulates the following: if he is diagnosed with a terminal illness he does not want any interventions that will prolong his life. Mr. L’s attending physician is well known for his faith-based commitment to life and has refused to authorize, as suggested by the housestaff, a do-not-resuscitate order and has placed Mr. L on a respirator. The residents and the nurses caring for Mr. L are concerned that the treatment he is receiving is inconsistent with his expressed wishes.
- What can the residents and nurses caring for Mr. L do?
- What should the residents and nurses do?
- How should the existent and possible therapeutic interventions for Mr. L be evaluated? In light of what goal of care?
http://www.nhpco.org/i4a/pages/index.cfm?pageid=3965: This website of the National Hospice and Palliative Care Organization has a link that enables patients or caregivers to download state-specific advance directives.
http://www.abanet.org/aging/myths.html: This article by an attorney, Charles Sabatino, succinctly sums up the legal myths surrounding advance directives and their usage.
http://www.kidney.org/atoz/atozItem.cfm?id=21: This website of the National Kidney Foundation is an excellent general resource on advance directives with specific information regarding dialysis and advance directives.
http://www.compassionindying.org/ad.php: This is the website of one of the oldest “death and dying” organizations in the world, Compassion in Dying. It contains useful information on advance directives and also directs readers to state-specific resources.