Women's Health and Education Center (WHEC) - End-of-Life Decision Making

End-of-Life Decision Making

WHEC Practice Bulletin and Clinical Management Guidelines for healthcare providers. Educational grant provided by Women's Health and Education Center (WHEC).

The rationale to justify the training of obstetricians and gynecologists to deliver palliative care has been described by many authors. Obstetricians and gynecologists, including those in training, care for women throughout their life and not infrequently need to participate in end-of-life decision making. Tragic accidents occasionally threaten the life of a pregnant woman and her fetus, and terminal outcomes occur for some patients with gynecologic cancer. As a result, physicians are expected to present options and guide patients as they make decisions in the face of such events. Hospital-based palliative care programs in United States have proliferated in the past 10 years, and obstetricians and gynecologists are likely to experience more frequent clinical interactions with palliative care services in their hospitals. According to the Center to Advance Palliative Care (CAPC), a clinical palliative care program existed in more than 31% (1,299) of 4,136 hospitals appropriate for palliative care in 2008 (the analysis excluded rehabilitation and psychiatric facilities). This growth reflects an increase from just 632 programs in 2000 ⁽¹⁾. Hospitals with palliative care consultation services, as compared with peer organization, were more likely to have a cancer program approved by the American Cancer Society (ACS), to have greater than 250 beds, and to be a member of the Council of Teaching Hospitals ⁽¹⁾. Nearly 50% of hospitals located in cities with populations larger than 1 million have palliative care services. On a public health level, obstetricians and gynecologists may be the ideal clinicians to offer and provide palliative care concurrently with curative measures when disease trajectories are uncertain. Life-threatening situations are never easy to deal with, even for the well trained.

The purpose of this document is to discuss issues related to end-of-life care, including terms and definitions, ethical principles, legal constructs, physician-patient communication, and educational opportunities pertinent for specialists in women’s healthcare. The purpose of this End-of-Life Care Series is to bridge the gap in knowledge of palliative care by providing an overview of the concept of palliative care and a discussion of the benefits and barriers to optimum palliative care at the end of life. It lists the benefits of palliative care at the end of life; describes the barriers to optimum delivery of palliative care through hospice; and describes the components of decision making for end-of-life care. Physicians must be careful not to impose their own conception of benefit or burden on a patient. End-of-life care is particularly challenging for pregnant women, whose autonomy is limited in many states. Many apparent conflicts will be averted by recognizing the shared interests of the woman and her fetus.

Introduction

With ongoing advances in medicine and public health, many diseases that once caused immediate death are now chronic conditions managed over a period of time. Improvements in health care have also led to an increase in life expectancy for both men and women (and all races) to 77.6 years of age ⁽²⁾. As a result, many of the leading causes of death are chronic conditions in older patients. It is reasonable to assume that many patients with these conditions will experience a functional decline over the 6 to 12 months before death. In fact, it has been estimated that a period of illness and functional decline precedes death for 80% to 90% of patients ⁽³⁾. The rate of this decline varies according to the disease; for example, people with cancer will have a steady decline with relatively short terminal phase, whereas people with congestive heart disease, chronic obstructive pulmonary disease (COPD), and dementia, will have a slower, gradual decline marked by periodic crises and sudden death. Despite the difference in characteristics of the decline, the optimal approach for all patients during this time in the course of disease is palliative care, or care that is directed at enhancing the patient’s quality of life. Yet, many patients do not benefit this treatment approach because of the lack of knowledge on this subject by many physicians.

Between 2004 and 2006, U.S. hospital costs rose by nearly 20%, primarily because of the large numbers of patients seeking care in hospitals, and the increase in availability of costly life-sustaining interventions ⁽³⁾. Hospitals now receive 75 cents of every Medicare dollar. The medical costs incurred during the last years of life are high; over 50% of lifetime medical expenses occur after the age of 65, and 33% after 85 years of age. In the last year of life, an individual incurs about 30% of his or her lifetime Medicare expenditures. However, spending on palliative care and hospice interventions accounts for a small percentage of this. Moreover, palliative medicine has been relatively neglected in the U.S. undergraduate curriculum, although this appears to be changing. A systemic review found a considerable increase in the provision of palliative care training in U.S. medical schools between 1999 and 2006, and by 2005 there were 52 fellowships in hospice and palliative medicine ⁽⁴⁾. The care of patients with advanced illness is hindered by under-treatment of physical and emotional symptoms, psychological and physical debilitation of caregivers, conflicts over decision making, and diminution of family financial resources. Patients often receive care that lacks continuity, with multiple care settings, multiple providers, confusing payment systems, and lack of critical services such as home and caregiver support.

As the definition of palliative care has evolved, end-of-life care has become one aspect of palliative care. The time period assigned to "end of life" has not been defined, with the phrase being used to describe an individual’s last months, weeks, days, or hours ⁽⁵⁾. The identification of three different disease trajectories makes the designation of a specific time period for the “end of life” implausible. These trajectories have been defined as a long period of high-level functioning followed by a short period of evident decline (such as with cancer); long-term limitations with intermittent exacerbations (such as with organ-failure diseases); and low-level functioning with gradual decline (due to frailty, dementia, or debility). Clinical judgment, survival prediction rules, patient "readiness," clinical characteristics, and performance scores have all been used to identify patients at the end of life in these trajectories, but none has been consistently reliable because of the variability inherent in many life-limiting diseases. The National Institutes of Health (NIH) has stated that a specific time-frame should not be used to define end of life until prognostication becomes more reliable ⁽⁶⁾. This lack of clarity adds to clinicians’ difficulty in talking to patients about the end of life and creates confusion for patients and their families. Both of these factors limit access to palliative care. Integrating palliative care throughout the continuum of care can help ensure that patients at the end of life receive care that improves the quality of their life.

Definition of Palliative Care

Among the first widely used definitions, established by the World Health Organization (WHO) in 1990, is "the active total care of patients whose disease is not responsive to curative treatment" ⁽⁷⁾. The WHO’s definition of palliative care includes relief of suffering, enhanced quality of life, and support for patients and families. It enumerates the following goals and principles:

To regard death as part of life and a normal process;

Neither to hasten nor to delay death;

To use a team approach to address the needs of patients and their families, including bereavement;

To initiate palliative care early in a patient’s illness, even when he or she is still receiving life-prolonging treatments such as chemotherapy or radiation therapy.

The definition noted by the America Academy of Hospice and Palliative Medicine (AAHPM) extended the concept of palliative care over a broader portion of the care continuum, thus more overtly addressing the issue of concomitant life-prolonging care: "the goal of palliative care is to prevent and relieve suffering and to support the best possible quality of life for patients and their families, regardless of the stage of disease or the need for other therapies. Palliative care expands traditional disease-model medical treatments to include the goals of enhancing quality of life for patient and family, optimizing function, helping with decision making and providing opportunities for personal growth. As such, it can be delivered concurrently with life-prolonging care or as the main focus of care" ⁽³⁾. As definition of palliative care has been refined, many healthcare professionals have echoed the AAHPM definition, calling for same comprehensive, interdisciplinary care provided through hospice to be better integrated throughout the entire continuum of care, from diagnosis to death. This approach enhances care by providing better symptom management and psychosocial support throughout the course of palliative care at the end of life. The field of palliative care continues to grow, and an increasing number of palliative care programs are being established in hospitals and other institutions. Many of these programs have a hospice component.

Philosophy of Hospice

The contemporary hospice movement is the basis for the field of palliative care, so a brief overview of hospice is needed. Historically, the home was the place of births and deaths, but advances in medicine and technology led to treatment delivered in hospitals, and cure became an expectation. The number of patients who were dying in institutions, alone and in pain increased, and the concept of hospice was formed to bring a painless, respectful death back into the home ⁽⁸⁾. The term "hospice" is most often used to describe the concept of care or services provided in the home, but it also refers to an inpatient unit within an institution or a free-standing facility that provides such services. The hospice philosophy is based on the idea that death is a natural part of the life cycle; hospice affirms life ⁽⁹⁾. The first hospice, St. Christopher’s Hospice, in London, was founded in 1967 by Dame Cicely Saunders, a nurse who later became a physician. Saunders, who died in July 2005, was the first to adopt the philosophy of providing skilled care to address the physical, psychosocial, and spiritual needs of a dying patient and his or her family ⁽⁸⁾. The approach to hospice care is holistic, with an interdisciplinary healthcare team working together to enhance the quality of life by addressing not only physical needs but also psychological, social and spiritual needs. Treatment is individualized to meet the needs of the patient and his or her family. The focus is not on curative therapy; however, relief of the patient’s pain and suffering is paramount.

In the United States, the hospice concept began as volunteer programs to help patients with cancer to die at home, and the first hospice home care program began in 1974 with Connecticut Hospice, which was founded by the National Cancer Institute (NCI). Hospice programs became more wide spread in the early 1980s, when the Medicare Hospice Benefit was instituted ⁽⁹⁾. While this benefit led to reimbursement through Medicaid and private insurances, enabling more people with terminal illness to receive palliative care at home and in hospice units, the eligibility requirements created some challenges. As of 2004, there were 3,650 operational hospice programs in the United Sates, serving more than one million patients ⁽¹⁰⁾. As expected, almost all hospice care (96%) is provided as routine care in the home. As life expectancy continues to increase and patients live longer with one or more chronic diseases, healthcare professionals have emphasized the need for elements of hospice earlier in the course of illness. Over the past decade, many healthcare professionals have called for expanding the concept of hospice to enhance the care of patients who are seriously ill but do not meet the eligibility criteria for hospice or who do not wish to choose hospice care. These efforts have yielded an increase in palliative care services.

Ethical Integrity of the Health Care professional

Because physicians, like patients, are autonomous agents, they usually cannot be compelled to violate personal ethical or religious commitments in service to the patient ⁽¹¹⁾. If physicians have moral reservations about providing certain forms of care-giving or about stopping treatment, they should (if appropriate to the circumstances) make that known at the outset. Physicians must not stand in the way of patients’ desires to seek other caregivers and should, where possible, help guide the transition. The profession of medicine is guided by its moral commitment to avoid subjecting a patient to harms that are greater than potential benefits (the principle of non-malfeasance). On this basis, physicians have a presumptive obligation not to provide treatments that are untested, contraindicated, or useless. For this reason, a patient demand for care that she deems desirable is not sufficient to impose on providers an absolute obligation to provide care that is futile or likely to be harmful without offering corresponding benefit.

Good communication is essential to effective palliative care. Key skills for clinicians include:

Communicating bad news;

Conducting a goal setting meeting with patients and their families;

Discussing advance care planning including artificial nutrition and hydration and Do-Not-Resuscitate (DNR)

Good communication requires preparing for the encounter, creating a supportive environment, active listening, appropriate awareness of non-verbal behavior and expressing empathy ⁽¹²⁾. Clinicians should be open to exploring emotion and meaning. It is important to evaluate the patient and family’s knowledge of the current situation and desire to learn new information about prognosis and what the future holds, and to communicate in a manner appropriate to their culture and education. Bad news may be followed by acceptance or denial and appropriate strategies for both situations should be prepared. There is moderate-quality evidence that: intensive education improves clinician communication skills; and provision of prompt cards to patients improves communication. A good opportunity to initiate the discussion of care-giving goals, including end-of-life care, is during well-patient care, either at the time of the periodic examination or during pregnancy. Because a patient’s wishes regarding care might change over time or under different conditions of illness, these discussions should include occasional reexamination of values and goals, and if necessary, updating of the advance directives and other documentation. Decision making should be treated as a process rather than an event.

Legal Developments of End-of-Life Decision Making

In addition to the emotional and medical challenges that accompany decision at the end of life, care in such situations may be shaped by statute and legislation. Laws governing such situations vary from state to state. In 1990s, there were a number of developments in law that influence end-of-life decision making. First, in June 1990, Cruzan v. Director of the Missouri Dept. of Health, the United States Supreme Court affirmed that patients have a constitutionally protected right to refuse unwanted medical treatments ⁽¹³⁾. The ruling also affirms the states’ authority to adopt procedural requirements for the withdrawal and withholding of life-prolonging medical interventions. A second legal development was the passage of the federal Patient Self-Determination Act (PSDA), which went into effect December 1, 1991 ⁽¹⁴⁾. The PSDA requires Medicaid- and Medicare-participating health care institutions to inform all adult patients of their rights "to make decisions concerning medical care, including the right to accept or refuse medical or surgical treatment and the right to formulate and advance directive". Under the PSDA, institutions that receive Medicare or Medicaid reimbursement are legally required to provide this information to patients on admission for care or on enrollment in a health maintenance organization. The institution must note in the medical record the existence of an advance directive and must respect these directives to the fullest extent under state law. Simply put, the aim of the PSDA is to empower patients to make decisions regarding their medical care.

A third development is found in legislation and legal rulings concerning the autonomy of the pregnant woman to refuse treatment. Although courts at times have intervened to impose treatment on a pregnant woman, currently there is general agreement that a pregnant woman who has decision-making capacity has the same right to refuse treatment as non-pregnant woman ⁽¹⁵⁾. When a pregnant woman does not have decision-making capacity, however, legislation frequently limits her ability to refuse treatment through an advance directive. As of 2006, 31 states had living will statutes that explicitly forbid the withholding or withdrawal of life support either from all pregnant patients or from pregnant patients whose fetuses could become, or currently are, viable ⁽¹⁶⁾. Only four states specifically permit a woman to choose to refuse life-sustaining treatment if she is pregnant. The other states which have no living-will statute or make no mention of pregnancy. Similar types of restrictions exist in some states with respect to a surrogate who is appointed to make decisions on behalf of a pregnant woman ⁽¹⁵⁾. Statutes that prohibit pregnant women from exercising their right to determine or refuse current or future medical treatment are unethical.

A final development pertains to euthanasia and physician-assisted suicide. Euthanasia refers to the administration of drugs with the intention to ending a patient’s life at her request. Physician-assisted suicide refers to supplying a patient with drugs or a prescription for drugs knowing one is enabling a patient to kill himself or herself. Oregon’s 1997 Death With Dignity Act, with permits physicians to write prescriptions for a lethal dosage of medication to people with a terminal illness, was upheld January 2006 by the Supreme Court. No other state in the United States allows such acts, but other countries that authorize physician-assisted suicide or euthanasia include Belgium, The Netherlands, and Australia. In contrast to the previous decisions and legislation, some have argued that irrespective of the individuals’ specific circumstances, support should be offered to maintain life.

The History of DNR Orders

DNR orders are medical interventions that prevent patients from receiving treatments felt to be futile and not in their best interest. Like other medical interventions, DNR orders have risks and benefits, therapeutic effects, and side effects. The decision regarding a medical intervention should be based on the risk-benefit ratio of the intended and unintended effects. The intended effects of DNR orders are to spare patients from interventions, such as chest compressions, if they are unlikely to provide significant benefit. In medicine, we also need to consider the unintended consequences of medical interventions. The history of DNR orders at Johns Hopkins reflects their history across the country.

DNR Orders at Johns Hopkins:

1977 – Policy on DNR orders was proposed;

1982 – Policy was adopted;

1984 – A controversial case in which hyperalimentation is discontinued by the nutrition team because patient had DNR order on chart resulted in review of the policy;

1988 – Review of consequences of policy on care of autoimmune deficiency disorder syndrome (AIDS) patients: there was concern that medical residents were less aggressive in treating patients with DNR status, and that the policy led to an all-or-none approach; living-wills were proposed as a solution to the problem;

1989 – Policy was clarified; options added to the DNR order for status of vital sign monitoring, blood drawing, antibiotic use, and nutrition / feeding status to the DNR order;

1990 – Provision was added to policy for resuscitation of patients with DNR orders on record who arrest during a procedure.

At the time that DNR orders were being developed, a series of studies suggested that certain patients had a poor prognosis when they underwent resuscitation. For example, one study found that less than 2% of nursing home patients who were given cardio-pulmonary resuscitation (CPR) after cardiac or respiratory arrest survived to be discharged from the hospital. In contrast to 10% which was the approximate average for survival after resuscitation in patients over the age of 65. This was one of many studies that encouraged clinicians to eliminate “futile” treatments ⁽¹⁷⁾.

Legal Advisor: Advance Directives

Advance directives can be a difficult topic because they deal with end-of-life and other serious medical situations. However, advance directives are valuable to patients and health care providers alike because they minimize conflict between family and health care providers by clarifying and respecting patients’ wishes. An advance directive is the formal mechanism by which a patient may express his or her values regarding their future health status. It may take the form of a proxy directive or an institutional directive or both:

Proxy directives, such as the durable power of attorney for health care, designate a surrogate to make medical decisions on behalf of the patient who is no longer competent to express her choices. The terms health care proxy, health care agent, and surrogate can be used interchangeably. The term surrogate is used in this document.

Instructional directives, such as living wills, focus on the types of life-sustaining treatment that a patient would or would not choose in various clinical circumstances.

What Are Advance Directives?
An advance directive is a document in which an individual appoints a health care agent. The document sets forth instructions for health care treatment in the event the individual "lacks the capacity to make or to communicate health care decisions." Advance directives include health care proxies and living wills. Health care proxies are "document[s] delegating to an agent the authority to make health care decisions" and are governed by the state law. Living-wills are documents specifying the nature or scope of medical care an individual wishes to receive in the event he or she becomes incapacitated. These interventions might include resuscitation efforts, artificial feeding and hydration, and comfort measures. Although Massachusetts law does not govern living-wills, they lend guidance to an agent’s decisions ⁽¹⁸⁾.

Health Care Agents
Every competent adult ("principle") may appoint an agent (and an alternate) who has the authority to make health care decisions for the principle should he or she become incompetent. No person who operates administers, or works at a facility in which the principle is a patient may serve as a health care proxy, unless that person is related to the principle by blood, marriage, or adoption. An agent has the authority to make health care decisions for the principle (subject to any limitations identified in the proxy or by law). To assist in making decisions, the agent is entitled to all medically necessary information via records and consultations with the principle’s health care providers. The decision of the agent takes priority over the wishes of other individuals, including a person with a durable power of attorney, except as otherwise provided by the proxy or a court order over-riding the proxy.

Health Care Proxies
A health care proxy must: 1) identify the principle and agent, 2) state that the principle vests the power to make health care decisions to the agent, 3) outline any limitations on the agent’s authority, and 4) indicate that the proxy takes effect upon the incapacity of the principle. The law presumes the validity of a health care proxy unless proven otherwise in court. A health care provider given a copy of a proxy must place it in the principle’s medical record. A proxy is revoked when a principle performs an act that evidences intent to revoke the proxy, including the execution of a subsequent proxy, or divorce or separation where a spouse is the principle’s agent. When notified of the revocation of a proxy, staff must notify the principle’s attending physician who must record the revocation in the principle’s medical record and notify the agent orally and in writing, as well as any additional known health care providers of the principle.

Incapacity
Capacity to make health care decisions is defined by Massachusetts law as "the ability to understand and appreciate the nature and consequence of health care decisions, including the benefits and risks of and alternatives to any proposed health care, and to reach informed decisions." Incapacity of a principle is determined by his or her attending physician (who has not been appointed the principle’s agent). The determination must be in writing in the principle’s medical record and include the "physician’s opinion regarding the cause and nature of the principle’s incapacity as well as its extent and probable duration." If the incapacity stems from mental illness or a developmental disability, the attending physician must consult with the appropriate specialist to determine incapacity. Once the determination of incapacity has been made, the physician must notify verbally and in writing: 1) the principle if there is any indication he or she might comprehend the notice, 2) the agent, and 3) and the director of any mental health facility to or from which the principle was transferred. A physician may also make the determination that a principle has regained capacity, in which case, the agent’s authority stops and the principle himself must consent to treatment. Health care proxies executed in another state, which comply with the laws of that state, are valid in Massachusetts.

Important Differences between Health Care Proxies and Living Wills

Advance Directives, such as Health Care Proxies and Living Wills, allow people to retain control over medical decisions. Massachusetts law allows people to make their own Health Care Proxies, but does not officially recognize Living Wills. A Health Care Proxy designates another person to make medical decisions should you be unable to do so, and a Living Will allows you to list medical treatments that you would or would not want if you became terminally ill and unable to make your own decisions. The Massachusetts Health Care Proxy Law (Massachusetts General Laws, Chapter 201D) permits people to appoint a Health Care Proxy (called an "Agent" in the law) using the Health Care Proxy Form. Health care providers and facilities are bound to follow your Agent's decisions as if they were your own. You are free to choose almost anyone as an Agent, but it is important that you discuss your treatment preferences with your Agent. You may also write on the form certain treatments that you do or do not want, or limit the authority of your Agent. You may also appoint an Alternate Agent, in case your Agent is unavailable or unable to make decisions regarding your care.

The Proxy becomes effective when your doctor determines that you are unable to make or communicate health care decisions. Your doctor then must record in the chart the cause and nature of your incapacity as well as its extent and probable duration. In order to appoint an Agent, you must be at least 18 years of age. You do not need a lawyer to fill out the form and make it legally binding. In order for it to be binding, you must sign the form in the presence of two adult witnesses, neither of whom are either your Agent or your Alternate Agent. Once you have signed the form, it is recommended that you make at least four copies. Keep the original yourself, and give copies to your Agent, Alternate agent, your physician, and anyone else who may be involved in treatment decisions if you ever become unable to make decisions for yourself. Copies of the form are as legally valid as the original. You may designate anyone over 18 years of age to be your Agent or Alternate Agent, except the administrator, operator or employee of a health care facility, such as a hospital or nursing home where you are a patient or resident, unless that person is related to you by blood, marriage or adoption.

The form remains valid unless you revoke it by: signing another Health Care Proxy form at a later date; legally separating from or divorcing your spouse and your spouse is named as your Agent; notifying your Agent, your doctor, or other health care provider, orally or in writing, that you want to revoke your Health Care Proxy, or doing anything else that clearly shows that you want to revoke the Proxy, for example, tearing up or destroying the Proxy, crossing it out, etc. Massachusetts is one of only three states that recognizes Health Care Proxies but does not recognize Living Wills. Living Wills are still potentially useful because they guide Agents and physicians about the types of choices a person would make.

The Health Care Proxy is a simple document, legally valid in Massachusetts, which allows you to name someone (an “agent”) to make health care decisions on your behalf if you are unable to make or communicate those decisions. This Health Care Proxy document, provided free of charge, gives a clear explanation of the responsibilities of a health care agent, and simple directions on how fill out and sign the form. There are also instructions on how to revoke or cancel the document at a later date, if you choose to do so.

Massachusetts Health Care Proxy Information, Instructions and Form (.pdf, 4 pages)

Information, instructions, and form for naming someone you know and trust to make health care decisions for you if, for any reason and at any time, you become unable to make or communicate those decisions.

Shared Decision Making Regarding the End-of-Life

The process of decision making regarding the end of life may take place under two different circumstances. In the first, decisions are made in an acute situation of present health crisis; these are immediate choices that determine actual end-of-life treatment. In the second, decisions are made that proactively provide for possible future end-of-life situations; these decisions are expressed through advance directives. In practice, however, the distinction may not be drawn sharply, and such decision making often is more appropriately thought of an ongoing process or conversation. Because circumstances may change, goals also may change over time and will need to be addressed with all involved parties on a regular basis.

An ongoing process of informed consent requires physicians to communicate information regarding the patient’s health status and comparative risks and benefits of treatment (including no treatment) so that patient, or if patient lacks decision-making capacity, surrogate may determine goals of the care. The expression "nothing more can be done" is misleading short-hand that improperly equates care with cure, and in so doing, ignores the importance of the physician’s role in providing comfort for the dying patient ⁽¹⁹⁾. If the patient or surrogate and physician finally disagree on the goals that should guide care, a clearly defined process of discussion and consultation should be followed to resolve the disagreement. Examples of the process are available ⁽²⁰⁾. In many institutions, such disagreements are first addressed by an ethics consultation services to clarify the cultural, religious, or personal considerations that shape decision making, the parties may be able to resolve apparent conflict. The specific details of this process may vary by institution and locality.

Criticisms of Advanced Directives

There are two major criticisms of advanced directives. First, they are not demonstratively better than physician judgment. Secondly, patients do not truly understand the meaning of the decisions, nor are the decisions sustained. They are changeable over time and affected by the circumstances of the moment and do not reflect accurate preferences about treatment. Although advanced directives can reassure patients who are fearful about a future of debilitation, they have two important drawbacks ⁽²¹⁾. First, these legal documents are accepted most readily only in the circumstances in which they are least needed. When the advanced directive is in alignment with physician judgment, it helps support subsequent interventions. However, when the directive stipulates more aggressive care than appropriate for the circumstances or less care than seems appropriate, the legal document confounds the provision of fitting treatment, which is especially problematic when decisions must be made rapidly. Second, advanced directives fail to take into account the significant change that can occur in a person’s interests and values from the time he or she signs the document to the time its stipulations are to be enforced. Several studies have shown that advanced directive decisions are not reliable and that they change over time ⁽²²⁾.

How well are we able to predict when life-sustaining treatment is futile? A 1994 study evaluated 3,600 patient outcome based on Apache II score, which has been used to predict short-term survival of seriously ill patients. Patients were treated aggressively regardless of their initial Apache II score. Of the 3,600 patients, certain death within 48 hours was predicted for 137. Of these, all but six died. The six patients predicted to die who survived represent the five percent "miracle" rate – patients who defy the odds. Thus, most experienced physicians who are clinically aggressive will have a story of a miraculous survival. The authors conclude that "…prospectively, this algorithm has the potential to indicate the futility of continued intensive care but at the cost of 1 in 20 patients who would survive if intensive care was continued." The paper also looked at the cost per survivor in the “futile” group in the study ⁽²³⁾. This was calculated by adding the cost of treating all the patients where care looked futile by the number of survivors from that group (the total cost of treating all 137 patients divided by the 6 survivors) the cost per survivor was surprisingly low (about $250,000). This is because the patients in this group who did not survive mostly died quickly despite aggressive treatment. The largest costs in intensive care are not associated with those with the poorest prognosis, but with those with intermediate prognosis who often spend a long time in the intensive care unit (ICU) struggling to recover. Holmes and colleagues also used an algorithm in an attempt to predict futility of life-sustaining treatment ⁽²⁴⁾. The algorithm was applied to 2,256 patients following cardiac surgery. Its use was 97% accurate in predicting death – meaning that of the patients predicted to die, 3% survived. However, use of the algorithm would have saved only 2% of treatment costs. Reducing costs significantly would have required a higher threshold for aggressive treatment. Thus, to save meaningful amounts of money, treatment would have been withheld from patient groups with a greater chance of survival.

Surrogate Decision Making

If the patient who lacks decision-making capacity has not designated a surrogate, state law may dictate the order in which relatives should be asked to serve in this role. The individual selected should be someone who knows the patient’s values and wishes and will respect them in his or her role as surrogate decision maker. If there is conflict regarding the designation of a surrogate, it may be appropriate to seek the advice of an ethics committee or consultant or possibly, the courts. The benefit of choosing a surrogate is immeasurable because this individual has the same authority the patient would if she were able to make decisions. The surrogate has the legal right to all confidential medical information and ideally would be someone trusted and chosen by the patient herself. Proactively choosing surrogate allows the opportunity to discuss pertinent religious or moral beliefs with that individual. One additional precaution a patient can take to be sure his or her wishes are respected is the execution of a living will. The surrogate decision maker is ethically obligated to base decisions on the wishes and values of the patient. If these wishes and values have been explicitly stated, either in writing or in oral discussion, the surrogate has to interpret and apply them in the current situation. If wishes and values have not been explicitly stated beforehand, the surrogate has to attempt to extrapolate them from what is known about the patient. In some cases (for example, a never-competent patient), the surrogate will have to decide entirely on the basis of what is in the best interests of this particular patient.

Pregnant Patients and End-of-Life Decisions: Preventing Conflict

For the overwhelming majority of pregnant women, the welfare of the fetus is of the utmost concern. This concern motivates women to modify their behaviors of months at a time and to undergo the discomforts and risks of pregnancy and delivery. This maternal interest in fetal welfare traditionally has been the basis of the fundamental ethical commitment of obstetricians and gynecologists: that they are responsible for both the pregnant woman and her fetus and that they must optimize the benefits to both while minimizing the risk to each. In recent years, some have advanced the view of the "fetus as patient" – an ethics framework that highlights question about what should be done in cases in which the pregnant woman’s decisions about her own health seem unlikely to optimize fetal well-being. Many of these apparent conflicts will be averted by recognizing the interconnectedness of the pregnant woman and fetus with an approach that emphasizes their shared interests. For cases in which their interests do diverge, however, candid discussion of these matters in advance of a situation, conflict, or crisis is important. Pregnant women’s autonomous decisions should be respected, and concerns about the impact of these decisions on fetal well-being should be discussed in the context of medical evidence and understood within the context of women’s values and social context ⁽²⁵⁾.

Within the context of obstetric care, situations rarely arise when a dying pregnant woman must decide between caregiving goals that emphasize palliative management for her own illness or an interventionist strategy, such as cesarean delivery, for the sake of her fetus. Likewise, she might be forced to decide between a curative strategy, such as chemotherapy, for her metastatic breast cancer and a course that poses less risk to her fetus but offers her less anticipated benefit. In either case, it is safe to assume that having been provided with all of the clinical information necessary to make her decision, she regards the choice difficult, possibly excruciating one and one that she wishes she did not have to make. The patient with a life-threatening condition identifies treatment goals by considering her beliefs and values in the context of obligations and concerns for her family, her fetus, and her own health and life prospects.

The obstetricians and gynecologists, as the woman's advocate, should attempt to ensure that the wishes of the pregnant patient are followed. Even if the patient is no longer able to make her own decisions, her previously expressed wishes and values (whether expressed as an instructional directive or through the appointment of a surrogate decision maker) should guide the course of treatment, whenever legally possible. When this is not possible, clinicians should advocate changes in law ⁽²⁶⁾.

Ethical / Legal Aspects of Palliative Care

Physicians are ethically bound to adhere to the principles of informed consent and to objectively evaluate patients' decision-making capacity. In addition, physicians should promote the completion of advance directives, to ensure patient autonomy and the right of patients to have their wishes for treatment met. High-quality palliative care can be delivered without legal hindrance, provided that physicians understand the clinical the clinical standards of practice and the legal requirements of their own states. Informed consent is the basis of making in health care; it is a legal and ethical requirement for all medical interventions ⁽²⁷⁾. The patient's capacity to make healthcare decisions is an essential element of informed consent. The patient has right to accept or refuse treatment, provided that he or she understands the risks and benefits of the treatment. Decision-making capacity is usually questioned only when a healthcare professional or family member believes the decision to be "unreasonable". In most cases, the physician can determine the patient's decision-making capacity. The three essential elements in assessing decision-making capacity are the patient's ability to understand, to evaluate, and to communicate ⁽²⁸⁾.

On occasion, it may be necessary to obtain a psychiatric or psychological referral. Some tools that may be of benefit include the Mini-Mental State Examination, which establishes reasoning ability; and the Dementia Rating Scale and the Alzheimer's Disease Rating Scale, both of which measure cognitive function. Although none of these tests can specifically evaluate the capacity for decision-making, they may contribute to an overall evaluation. Several points should be remembered during the assessment of capacity. When the patient lacks decision-making capacity, guardianship and surrogacy laws are legal devices available for making decisions. With both of these devices, an appointed family member is responsible for making decision on the basis of the "best interest" of the patient. A consensus-based decision-making strategy, involving family and caregivers, has been recommended. The best approach, however, is planning with advance directives, which document a patient's wishes before the incapacity developed.

Death is often preceded by medical decisions that potentially shorten life (end-of-life decisions), for example, the decision to withhold or withdraw treatment. Respect for patient autonomy requires physicians to involve their patients in this decision making. The objective of this study was to examine the involvement of advanced lung cancer patients and their families in end-of-life decision making and compare their actual involvement with their previously stated preferences for involvement ⁽²⁹⁾. In half of the cases, advanced lung cancer patients, or their families in cases of incompetence, were not involved in end-of-life decision making, despite the wishes of most of them. Physicians should openly discuss end of life decisions and involvement preferences with their advanced cancer patients.

Legislative Update: Personalize Your Care Act of 2011; 4/15/2011 – Introduced. Personalize Your Care Act of 2011 - Amends titles XVIII (Medicare) and XIX (Medicaid) to cover a Voluntary Advance Care Planning Consultation. Directs the Secretary of Health and Human Services (HHS) to make grants to eligible entities to: 1) establish statewide programs for physician orders for life-sustaining treatment, or 2) expand or enhance existing programs for physician orders for life-sustaining treatment. Directs the Secretary to adopt, by rule, standards for a qualified electronic health record, with respect to patient communications with a health care provider about values and goals of care, to adequately display the patient's current: 1) advance directive, and/or 2) physician order for life-sustaining treatment. Requires under Medicare and Medicaid that an advance directive validly executed outside the state in which the directive is presented must be given effect by a service provider or an organization to the same extent as an advance directive validly executed under the law of the state in which it is presented. Requires that, in the absence of a validly executed advance directive, any authentic expression of a person's wishes with respect to health care be honored.

Summary

Effective proactive communication between the patient and the physician is the cornerstone of the therapeutic relationship. Sometimes the maximization of comfort is the chosen therapeutic goal. In this case, the care offered by the physician can continue to benefit the patient in a number of important ways by providing humane and supportive care at the end of life. Explicit identification of the operative goals of care is important for four reasons:

Assumptions about the objective of care inevitably shape perceptions about the appropriate course of treatment;

These objectives may be understood differently by the patient and her caregivers;

Unarticulated commitments to certain goals may lead to misunderstanding and conflict;

The goals of care may evolve and change in response to clinical or other factors.

Palliative medicine is medical care focused on relief of physical, emotional, and existential suffering, and support for best possible quality of life for patients and their family caregivers. In practice, palliative care involves assessment and relief of troubling symptoms as well as skilled communication with patients and families about the goals of care and the treatment plan that will achieve these goals and attention to safe and well-coordinated care across the multiple settings that patients traverse during serious illness. Hospitals are increasingly investing in palliative care services to improve patient care, enhance satisfaction, and reduce ICU and total bed days and costs. Overall, these programs have been found to be effective in facilitating patient transitions from acute, high-cost hospitals to more suitable settings, such as the home. Palliative approaches to care are a core responsibility of clinicians from all specialties, with expert consultation sought for intractable or especially complex problem. By taking the time to complete a health care proxy in advance of an illness or injury, patients can express their preferences for medical treatment. This will not only ensure the patients’ wishes are fulfilled, but relieve family members from the burden of making difficult, uninformed decisions. When a patient does not have a health care proxy, a health care provider may rely on the informed consent of parties responsible for the incapacitated patients as provided by law.

Funding: WHEC Initiative for Global Health provided the funding for research, writing and development of the End-of-Life Care series.

Resources

Massachusetts Law about Health Care Proxies and Living Wills

Massachusetts Commission on End of Life Care

References

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