Clinical palliative care for surgeons: part 1

PALLIATIVE CARE

Clinical Palliative Care for Surgeons: Part 1 Moderator: K Francis Lee, MD, FACS Presenters: Gretchen P Purcell, MD, PhD, Daniel B Hinshaw, MD, FACS, Robert S Krouse, MD, Mary Baluss, JD Assessment and Discussion of Patient Preferences in Palliative Care

Clinical Informatics, and Associate Director of Medical Informatics Training, Duke University Medical Center.

Withdrawal of Support in Critically Ill Surgical Patients

ASSESSMENT AND DISCUSSION OF PATIENT PREFERENCES IN PALLIATIVE CARE

Palliative Care for Oncologic Patients

Gretchen P Purcell, MD, PhD Patients who have terminal illness face difficult decisions. They are sometimes offered toxic or invasive therapies that might only slightly improve symptoms or prolong survival for short periods of time. They are forced to choose between treatment side effects and complications of their disease. I would like to describe tools that can help one understand the patient’s preferences, or those of the patient’s family, and a framework for incorporating those preferences into management decisions. I will begin with a few definitions.

Legal Foundation and Protection for Palliative Care Dr Lee: The purpose of this session is to introduce the basic principles of palliative care to surgeons. We will provide kaleidoscopic coverage of clinical information for the practicing surgeon who often faces end-of-life care issues. The first part of the session provides lecturepresentations on assessment of patient preferences, withdrawal of support in critically ill surgical patients, palliative care of oncologic patients, and legal foundation and protection for palliative care. The second part, to be presented in a subsequent paper, documents the question-and-answer session involving the surgical audience. Dr Gretchen Purcell will present how decisionanalytic concepts such as patient preferences and utility measurements can be applied to palliative care discussions. She is Assistant Research Professor of Surgery and

Definitions Preferences

A preference is composed of the patient’s feelings, opinions, and priorities about the conditions that result from disease. It’s a subjective and very personal notion, and it is not equal to what some people think of as quality of life. Quality-of-life instruments measure how functional a person is—physically, emotionally, and psychologically. They measure objective information such as how many times someone vomits or feels nauseated throughout the day. A preference is someone’s opinion about what it is like to not have complete functionality or to vomit several times a day.

This program was supported by the American College of Surgeons’ Surgical Palliative Care Task Force and by a grant from the Robert Wood Johnson Foundation. This paper is a transcription from a general session entitled “Clinical Palliative Care in the Trenches” presented at the Spring Meeting of the American College of Surgeons, New York, NY, April 2003. Correspondence address: K Francis Lee, MD, FACS, Department of Surgery, Baystate Medical Center, Tufts University School of Medicine, 759 Chestnut St, Springfield, MA 01199. Moderator: K Francis Lee, MD, FACS, Department of Surgery, Baystate Medical Center, Springfield, MA. Presenters: Gretchen P Purcell, MD, PhD, Department of Surgery, Duke University Medical Center, Durham, NC; Daniel B Hinshaw, MD, FACS, Departments of Surgery, VA Medical Center and the University of Michigan, Ann Arbor, MI; Southern Arizona Veterans Affairs Health Care System and the University of Arizona, Tucson, AZ; and Mary Baluss, JD, Pain Law Initiative, Washington, DC.

© 2004 by the American College of Surgeons Published by Elsevier Inc.

Utility

Utilities allow one to quantify a preference. A utility is a numeric value that is anchored by the values of 0, representing death, and 1, representing perfect health. Quality-adjusted survival

Preferences also can be measured in quality-adjusted survival or quality-adjusted life years, or sometimes qualityadjusted life months for people who face a short survival.

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Figure 1. A case of a woman with an incurable cancer facing ‘Surgery’ or ‘No Treatment.’ Square denotes decision node. Circle denotes chance node with probabilities of occurrence (0.8 versus 0.2). Asterix (*) denotes multiplication.

These numbers capture how much time the patient would be willing to give up to spend the rest of their survival in perfect health. Decision analysis

Our goal in understanding patient preferences is to help patients maximize their well-being and make decisions that will allow them to have the best quality of life during their survival. One formal technique for doing so is decision analysis. I am going to discuss this technique briefly to demonstrate how to use preferences elicited from patients. A decision tree is a way of representing a medical decision; choices are delineated on a decision tree. The choices are, for example, chemotherapy, an operation, or the decision to forgo treatment. Each choice has a set of possible outcomes, and each outcome is associated with some sort of value or utility for that outcome. The outcomes could be, for example, cure from the disease, relief from symptoms, or death. A decision tree has chance nodes that represent the likelihood of each outcome occurring. Each outcome must be associated with a probability of occurring. For each chance node, the probabilities must sum to 1. For example, consider the decision tree in Figure 1, representing the decision for a woman who has incurable cancer. She is considering having an operation that will not prolong her survival, but might alleviate some of the symptoms of her disease. The other choice is no treatment. If she forgoes treatment, it is likely that she will live 1 year with moderate symptoms. For this patient in Figure 1, the health state with moderate symptoms has a utility of 0.5 or 50% of perfect health for her.

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Figure 2. The same patient as in Figure 1, except the utility of mild symptoms is higher and the utility of moderate symptoms is lower than in Figure 1. Square denotes decision node. Circle denotes chance node with probabilities of occurrence (0.8 versus 0.2). Asterix (*) denotes multiplication.

She also has the choice of undergoing an operation, and, if she does, there is an 80% chance that the operation will allow her to live out that year of her life with only mild symptoms. For this patient, these mild symptoms have a utility of 0.6, which is slightly better than living with the moderate symptoms. But there is also a 20% chance that she will die from the operation. To compute the value of each of these choices, one must multiply the probability of each outcome by its value, and sum those products for all possible outcomes of a particular choice. For the patient in Figure 1, the expected value of having an operation is 0.48. The expected value for no treatment is 0.5. So for this particular patient, the choice that will give her the higher expected value, or is the most likely to give her the best chance at a good outcome, would be to have no treatment. Figure 2 describes another patient faced with a similar choice. This second patient may be a woman who considers that moderate symptoms are much worse, with a utility of only 0.4, and she considers that having mild symptoms is a much better condition, with a utility of 0.8. The patient may be someone who does not tolerate the moderate symptoms of pain or nausea very well. For this patient, the expected value for operation is 0.64, and the expected value for no treatment is 0.4. So for this patient, the possibility of having an improvement in symptoms is worth the possible risk of death from an operation. In expected-value decision making, one should select the choice with the highest expected value, but that choice does not guarantee the best possible outcomes.

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Figure 3. Standard Gamble evaluation of the utility of health state (A). Square denotes decision node. Circle denotes chance node with probabilities (‘p’ versus ‘1-p’) of occurrence.

The patient in Figure 2 has a 20% chance of dying during the operation, but she may take the choice of operation because that will most likely maximize her well-being. Measuring the utility of an outcome state: standard gamble

How are these utilities measured? The gold standard technique is called the standard gamble.1 Depicted in Figure 3, in performing a standard gamble, the decision maker, usually the patient, is given a detailed description of the health state (A) she would like to evaluate. She is offered the choice to remain in the known health state (A), usually for the rest of her life with a probability of 1, or she is given the chance to take a gamble, in which she has an opportunity to end up in perfect health (B) with probability of p, but she also risks death (C) with the probability of 1-p. In performing a standard gamble, one varies the probabilities until the decision maker is indifferent to these choices. At that point, the utility for health state A equals the probability p, the probability of perfect health (B). For example, if the patient is indifferent to remaining in health state A with certainty or a 50-50 chance of ending up in perfect health or death, then the utility for health state A would be 0.5. Consider performing the standard gamble for the health state of blindness. To measure the utility for blindness, one may describe in detail to the patient what it would be like to live the rest of his life being blind. One may want to describe what it would be like to be blind emotionally, functionally, and psychologically. Then one would ask, “If you are faced with spending the rest of your life with blindness, would you be willing

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Figure 4. Standard Gamble evaluation of the utility of health state (A) worse than death. Square denotes decision node. Circle denotes chance node with probabilities (‘p’ versus ‘1-p’) of occurrence.

to accept a 10% risk of death for 90% chance to live in perfect health?” If the patient accepts that risk, one can continue to vary the probability until the point at which the patient is indifferent. Again, the probability of perfect health at which the decision maker is indifferent equals the utility for the health state. Measuring the utility of an outcome worse than death

The above technique works for conditions that are preferred to death, but the palliative care providers know that there are some conditions that patients express to be worse than death. The standard gamble can easily be adapted to elicit utilities for health states worse than death, as shown in Figure 4. Again, the health state that one is trying to evaluate is described as A. The patient is given the choice of dying (C) immediately with certainty (probability 1), or a chance to gamble for living a perfect health (B), but a risk of ending up in the health state that is worse than death (A). The probabilities are varied to a point of indifference, at which point the utilities are going to equal p/(p-1). Because p is a number less than 1, one can see that this utility value will be negative, less than zero. The following is an example of the above model in practice. Some people say that being paralyzed from the neck down (A) would be a condition worse than death (C). At the beginning of the utility elicitation, one might ask the decision maker, “Let’s consider the possibility of being paralyzed from the neck down. Would you rather die than live in this condition for the rest of your life?” If the person says “yes,” then one would modify the standard gamble. The person eliciting the utility would say,

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Figure 5. Measuring the utility of health state (A) by time trade-off.

Figure 6. Measuring the utility of a health state outcome (A) worse than death by time trade-off.

“We will give you the choice of immediate death (C) or the chance at perfect health (B) but with a risk of ending up paralyzed (A).” Then one would vary the probabilities, for example, “Would you accept a 10% risk of paralysis for a 90% chance to live in perfect health?” And so on, the probabilities are varied, until the person becomes indifferent.

months), and nothing important is happening within that period of months. For people who are expected to live a long time, eg, 30 years, the first 5 to 10 years tend to have a higher utility than the last 5 or 10 years. If a very important event is coming up in the short time one is expected to live, the utility for time up to this event may be higher than the utility for time afterward. For example, if a patient is expected to live for 6 months, and the main goal is to be alive for a granddaughter’s birthday in 2 months, the utilities will not be constant over time. One cannot convert quality-adjusted survival to a utility in this case, but one can use quality-adjusted survival in its decision. To give an example of how this elicitation takes place, consider a time trade-off for a patient who is expected to live for 18 months with cancer, and there is significant pain from that cancer. One asks the patient, “Would you be willing to live for less than 18 months to live in perfect health?” If the person says “no,” the preference for 18 months is the same whether there is pain or not. If the answer is “yes,” one can begin the time trade-off. The person eliciting the utility could begin with the question, “Would you be willing to live for 17 months in perfect health, giving up 1 month of life?” If the patient says “yes,” the time is varied to perform the elicitation process. For example, the next question could be, “Would you be willing to live for only 1 month of perfect health and give up 17 months of life?” For some, the answer would be “no,” which would lead one to explore a number somewhere in the middle. The length of time in perfect health is changed until the minimum acceptable length of life is identified. Time trade-offs can also be modified for health states that are worse than death, although when this is done, one starts to lose the benefit of it being cognitively easy

Measuring the utility of an outcome: time trade-off

The standard gamble is somewhat cognitively challenging. It is also a little bit unnerving; it asks people to take the risk of death. Another technique that one can use to elicit preferences is called the time trade-off. One may elicit preferences for a health state using this technique by asking people to give up years or months of life in order to live in perfect health for a shorter period of time, rather than live a longer period of time in ill health. Using this technique, the patient is given a choice of living for X years in the health state (A) that one is trying to evaluate (Fig. 5). X should be the patient’s life expectancy or realistic time that she will spend in this health state. Alternatively, she is given the choice of living a shorter time, Y in perfect health, giving up X⫺Y years of life. One continues varying Y until the decision maker identifies the minimum amount of acceptable value for Y, ie, the minimum time that she would spend in perfect health to trade for X years in the ill health state, and this time is equal to the quality-adjusted survival. This number can be converted to a utility, a number that is anchored by 0 ⫽ death, and 1 ⫽ perfect health, with the utility for health state A ⫽ Y/X, but that is true only if utility is constant over time. This assumption may hold if someone has a short period of time to live (eg, if someone is going to live for only a couple of

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compared with the standard gamble (Fig. 6). In the time trade-off for health states worse than death (Health State A), one offers the patient the option of having certain immediate death, or one offers them living to complete life expectancy and living the first part of it in perfect health, and then the rest of it in the health state that one is trying to assess. Again, to do this, one varies the number of years in perfect health (Y) and finds the minimum accepted value the patient will trade. And one can calculate a utility with an equation shown in Figure 6. Measuring the value of an outcome: linear scale These techniques can be very confusing and time consuming. If they become too difficult for the patient to process, the palliative care professional can get a general idea of preferences by asking patients to rate their health states on a linear scale. At one end of the scale is death, and at the other end of the scale is perfect health. The patient adjusts the line or bar to a point where she considers the health state she is trying to evaluate: being paralyzed, being in pain, being blind, etc. She puts all the relevant health states on a single line, to get an idea about her priorities. It is important to understand that these values are not utilities. Linear scales do not incorporate risk attitudes in the way that a standard gamble does. One can measure the length of the line and determine where someone has rated their particular health states along it, but the measurement is biased by the tendency for people to avoid the end of the line and to space their outcomes, even though their values for the particular outcomes are not close. So, the linear scale is a method that is easy, quick, and can be used to help a health care provider understand a patient’s priorities. This technique is also a good reality check for the values from the standard gamble and time trade-off, and it can assess whether the other techniques discussed earlier have been used appropriately. The values measured in a time trade-off or standard gamble should be consistent with the ordering on a linear scale. Understanding preferences: minimal survival benefit One final method for understanding preferences is called the minimum survival benefit. This technique is particularly useful for surgeons. It is very useful when patients are faced with invasive or toxic therapies. The decision maker, in assessing a minimal survival benefit,

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is given the choice of spending the expected survival in the current state of health without treatment, or given the option of undergoing treatment, which must be described in detail. If the treatment is an operation for a particular disease, one should describe the possible complications, the possible side effects of the treatment, and how these events will affect the patient’s quality of life. One then asks the decision maker, “How much longer would you have to live to take this treatment? Would it be 1 month, would it be 2 months, or would it be a year?” This particular assessment method is useful because the result is directly clinically applicable. If the minimum survival benefit given by the decision maker is more than the expected survival benefit, then the patient should not undergo the treatment. Eliciting preferences: avoiding biases Many factors affect a patient’s preference for a health state. It is important to include information about the symptoms, the functional status, and the emotional and social states associated with a health condition when describing health states, because this information will affect the measured utilities. The utility that someone assigns depends on how long that person will spend in a health state, so one should make sure the duration of illness in the survival benefits are realistic in the health state descriptions. One also has to balance the positive and negative wording. If one talks only about the risk of death without talking about benefits, that tends to make utility values lower. The standard gamble is the only method that incorporates risk attitudes. If someone is considering a risky therapy with many side effects, one should use the standard gamble, if the patient is able. The family is not a good surrogate for patients in utility assessment. The patient should undergo the utility assessment on his or her own, if at all possible. There are several references for people who are interested in decision analysis and preference assessment. The text by Sox and associates2 covers the decision analysis in a very simple way. An article by Silvestri and colleagues3 discusses minimal survival benefits and how they apply to metastatic lung cancer. And there is a Web site that has much information about preference assessments, and some tools for building web-based utility assessment applications.4 Dr Lee: We will now proceed to the discussion of palliative care in critical care settings. The next discus-

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sant is Dr Daniel Hinshaw. He is Professor of Surgery, University of Michigan Medical School, and Medical Director, Palliative Care Consultation Team at the VA Ann Arbor Health Care System.

WITHDRAWAL OF SUPPORT IN CRITICALLY ILL SURGICAL PATIENTS Daniel B Hinshaw, MD, FACS I will set the stage by briefly reviewing suffering in the intensive care unit, and ethical principles underlying care of the critically ill. I will then examine the concept of medical futility in relation to advance care planning. Finally, I will present an overview of the process of transitioning a dying, critically ill patient from lifesustaining therapy to supportive care. I would like to propose that suffering in the critically ill is a result of an imbalance between the curative and caring traditions in health care. In the curative tradition, which is a more recent development, it is disease oriented. The curative perspective views patients in terms of their component parts or repositories for disease. Dr Fox5 states in an excellent article, “Where the only goal is cure, facts become differentiated from feelings and the body becomes disassociated from mind.” On the other hand, in the caring or palliative tradition, the focus is different. The attention is on the person and relief of that person’s suffering, including control of symptoms and, whenever possible, restoration of function. It does not depend so much on a complete understanding of the medical problems as it does on a relationship with the person. It takes time and is often at odds with the very busy, intense ICU environment. Ethics and care of the critically ill

There are four major principles of biomedical ethics that relate to care of critically ill patients: nonmaleficence, beneficence, autonomy, and justice. Two of these are drawn from the Hippocratic tradition. First, of course, is “do no harm,” a principle of nonmaleficence. Beneficence extends this principle, so that we must actually do good for the patient, not just avoid harm. More recently, in the last 100 years or so, there has been a gradual development of the principle of autonomy as opposed to medical paternalism. It is the recognition of the right of self determination for each patient, ie, establishing one’s own goals of therapy. Of course, there are autonomy issues for the provider as well.

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Finally, autonomy is in tension with justice, which is the equitable distribution of often limited health care resources. And as health care costs continue to rise, justice is going to be a more important issue. What about withholding versus withdrawing care? There is a fairly general consensus in the biomedical ethics community that there is not any fundamental ethical difference between withdrawing a treatment that is no longer beneficial, and not starting or withholding such treatment. If the decision has been made to withhold one treatment, all forms of treatment are really “up for grabs.” They all should be reviewed. That does not mean that as providers we feel the same way about withholding versus withdrawing care. It is often much more difficult emotionally to withdraw care. Advance directives

How do advance directives or advance care planning fit into this? The typical form in which advance care planning occurs is with a living will or a document patients may prepare, hopefully while still in good health, stating what their preferences would be under various hypothetical conditions of treatment. An extension of a living will is identification of a surrogate decision maker, a durable Health Care Power of Attorney who can advocate for patients when they are no longer able to advocate for themselves. Unfortunately, not even as much as one-third of the public has actually executed one of these advance care documents. The more important question is whether advance directives make any difference. There was a very interesting study from the University of North Carolina in 1996, in which patients were enrolled and interviewed prospectively, had advance directives prepared, and their outcomes were monitored over the next 6 months. The patients in the study were elderly. There was no significant association between patients’ willingness to receive aggressive therapy and whether the patients actually received aggressive therapy.6 In other words, it is a “toss-up.” It is not really clear whether advance directives will be used appropriately, or even be used at all, in a system where the investigators are consciously looking for and trying to enroll people in the study so that patients would have an advance care document in the “heat of battle.” A very important issue that has to come to the forefront is the issue of the “D” word. Unfortunately, in most discussions that occur around advance care plan-

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ning, death is not mentioned. The discussion is usually framed in organ-specific terminology, about cessation of heart or lung function rather than death. Of course, when the question is posed, “If your heart is going to stop, would you want something done to treat it?” most people would respond, “Of course I would.” But if the conversation is framed in terms of the statement, “You have a life-limiting illness; when you die of this illness, there will be, by a default, an attempt to resuscitate your corpse,” then most people probably will have a different view of what they may wish done or not done. Medical futility in the critical care setting

One of the most critical issues in the ICU is the determination of medical futility and the subsequent process of moving from an aggressive therapeutic approach to primarily supportive care. One definition of medical futility is “performing treatments that have no reasonable chance of achieving a therapeutic benefit for the patient.”7 But the rub comes as to how one defines reasonable. There have been a number of different attempts to define the word reasonable. One approach has been to determine whether a treatment has been ineffective in the last 100 cases. That would, in effect, represent a futile therapy. Another approach has been to look at specific diseases or specific treatments for diseases and determine under what conditions those treatments might be futile—a much more narrow attempt at defining futility. For example, bone marrow transplant patients who have respiratory failure and require ventilatory support—in addition to 4 or more hours of vasopressor support or sustained hepatic and renal failure—by consensus are deemed to be in a futile situation. In a different context, for trauma patients who have sustained a cardiopulmonary arrest outside a hospital, the likelihood of cardiopulmonary resuscitation being successful in the field is nil, another futile situation. Another example of probable medical futility is the elderly patient (greater than 70 years of age) in the hospital, who has an unwitnessed arrest. The likelihood of successful resuscitation is extremely low. When attempts have been made to use objective data such as the APACHE II scoring system to predict outcomes, such methods have failed to reliably predict futility. One may ask the question: Should the patient play

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a role in defining futile care? Would the patient’s goals of care and values have some impact on the definition? How do futility and palliative care interface? One should not wait for a determination of futility to introduce palliative care. Waiting for a determination of futility implies to the patient that if we think you will live, we will tolerate your suffering. But if we think you will die, we will treat your suffering. Emphasizing palliation in the face of uncertainties in regard to futility is not only the right thing to do, but also it may ultimately help to clarify what futile care is because it engages the patient and the surrogate decision maker in the process. Making the transition of care

How does one make the transition from life-sustaining support to supportive care for the dying ICU patient? It is important to realize that the process occurs over time. There has to be mutual recognition of futility within the treating team and with the patient or the surrogate decision maker and the family, and this has to occur in relation to the patient’s goals of care. It is extremely important to recognize that withdrawal of life-sustaining treatment is a medical procedure just like any other, and must be done in an organized, careful, methodical manner. The following are some of the routine steps that occur in a medical procedure. 1. A decision is made to perform the procedure. 2. Informed consent is obtained. 3. The details of the procedure need to be planned, including anticipating potential complications (eg, patient distress). 4. The patient should be moved to an appropriate setting. The patient may need to be moved to a different room or to a quieter part of the ICU. 5. The procedure should be performed with adequate sedation. 6. The procedure should be documented. 7. The outcomes must be reviewed.

The decision to withdraw life support is rarely an emergent decision. One must take all the time necessary to resolve any conflicts within the team and between team members and the family. Clinicians should be aware that personal values and biases often play a dominant role in their clinical decisions. Even if objective data are available (eg, APACHE II data), they are often disregarded. All team members who have a direct role in the patient’s care should have input. It is not fair to have discussion as the providers of record, and not include the

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nurse who then may need to spend the next 5 hours explaining to the patient and the family what was decided without the nursing input. Informed consent

The importance of informed consent is self-evident. It is usually the durable power of attorney for health care, the next of kin that is involved. Providers are under no ethical obligation to provide futile treatments, but futility is in the eyes of the beholder. Tell the truth. One must not make it complicated. The decision is centered on whether real consensus is present among the team, the patient, and the family in regard to likely outcomes. Efforts should be focused either or helping the patient survive and recover or, having come to consensus that the patient is dying, assisting in as peaceful a transition as possible. The right setting

Noisy monitors should be eliminated. All extraneous tubes and devices that do not contribute to the dying patient’s comfort should be discontinued. Routine laboratory studies or vital signs should not be obtained any longer. Whenever possible, visitation rules should be relaxed to increase access of the family, including children, to the dying patient. The ideal would be to create a therapeutic environment. To quote Marie De Hennezel,8 a French psychologist who cares for the dying: Can the team be organized so that two people always come when it’s a question of a procedure that may be painful? One simply to offer her presence, her warmth, and attention, while the other, just as attentively, does what has to be done with all possible competence. When three people get together like this, each wishing to draw on the presence of the other two in order to face a difficult moment, a composite being with truly miraculous powers is brought into existence. Sedation and analgesia

Some important principles relating to pain and analgesia include remembering the principle of “double effect.” There are built-in safety features with opiate analgesics. Patient receiving these agents will be sedated, ie, go to sleep, long before experiencing significant respiratory depression. It is critically important to avoid dose escalation several fold over the previous stable dose, particularly in a patient who is “opiate naı¨ve” or has had rela-

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tively low doses of opiate previously. The key is to titrate the dose and observe the patient closely for oversedation. There is a major ethical difference between titrating to relieve symptoms rapidly and administering a large, potentially apneic dose. One must also remember that there is no ceiling for opioids. The necessary dose is the dose that works, one that relieves distress. One must remember to titrate and not walk away from the patient. It may be necessary to leave periodically, but in that situation, one must work closely with the nursing staff, writing orders in such a way that they help clarify the process of dose titration. One may leave some physiologic parameters as boundaries within which the nursing staff can titrate the medication safely and effectively (eg, titrate morphine continuous infusion to maintain respirations less than 30 min⫺1, heart rate less than 100 min⫺1, and eliminate grimacing). One must document any changes to the orders and the reasons necessitating the changes to justify an alteration in the dosage titration. All treatments can be withdrawn. So, if circumstances justify withdrawal of one therapy, all treatments should be subject to appropriate change. One must be aware of the emotional and symbolic value of certain therapeutic interventions, even if they are only modest amounts of nutrition or hydration. The spiritual needs of the family and of the patient must be determined and addressed. One must be prepared to call for a spiritual advisor, priest, imam, rabbi, or someone important to the patient and family from the religious or spiritual perspective. Withdrawal of mechanical ventilation

The primary rationale for slow weaning of a treatment, such as ventilatory support, is to ensure good symptom relief. On the other hand, prolonged weaning also can prolong suffering. Sometimes it is very important to delay or slow the process so that members of a family can gather. In general, other life support should be discontinued before weaning from the ventilator. Before beginning withdrawal of mechanical ventilation, it is absolutely essential to reverse paralyzing agents. When the ventilator is withdrawn with stillactive paralyzing agents, the dying patient may experience great distress, but may not be able to show any visible sign because of ongoing paralysis. So all paralyzing agents must be stopped first, and then the patient should be sedated adequately. One must decrease the fraction of inspired oxygen to 21% (room

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air), delete positive end expiratory pressure, and then set the intermittent mandatory ventilation or pressure support to meet the patient’s full needs on room air. One must then gradually titrate the sedation as needed while gradually reducing the intermittent mandatory ventilation or pressure support. The patient can either be extubated or left with a T-piece with humidified air. If the patient is to be extubated, there will be noisy secretions. Glycopyrrolate is a useful drying agent. What happens if the person survives for an indefinite period? One must continue aggressive treatment to provide comfort. The family must be reassured that, although the actual timing of death is unpredictable, all efforts will be made to provide comfort and dignified care to their loved one until she or he dies. One may make arrangements to move the patient to a more suitable environment without creating the impression, real or unreal, that the patient is being abandoned or given less care and attention. Ultimately, the dilemma and the challenge for all of us is that in principle, people want a peaceful, dignified, comfortable death, but in reality, they do not want it quite yet. They prefer life-prolonging care in the hope that their peaceful, dignified, comfortable death can occur later. We will have an impact only when we assiduously treat the uncomfortable symptoms of all seriously ill patients, whether they are receiving life-prolonging care with its treatment-induced discomforts or only palliative care. Dr Lee: Next we will move our focus from the ICU setting to the cancer unit. Dr Krouse is Acting Director of Clinical Surgery in the Southern Arizona VA Hospital, and Assistant Professor of Surgery at the University of Arizona and Director of the Supportive Care Section of the Arizona Cancer Center.

PALLIATIVE CARE FOR ONCOLOGIC PATIENTS Robert S Krouse, MD I will discuss palliative care for oncologic patients which, of course, is an extremely broad topic. The scope of the title also suggests the broadness of care that can be offered to patients facing end of life with terminal diseases. Operation often is an important focus of discussion for patients facing end of life, along with other alternatives of care.

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What is palliative care? The World Health Organization defines it: “The active total care of patients whose diseases are not responsive to curative treatment. Control of pain, of other symptoms, and of psychologic, social, and spiritual problems is paramount. The goal for palliative care is achievement of the best quality of life for patients and their families.”9 It is important that surgeons participate in the palliative care team, or at least be available as a resource. We may have intimate knowledge of patients and their families, especially if we have operated on them or treated them before under a stressful condition. We have knowledge and experience with various surgical and other invasive procedures. We can assure that there is a surgical focus in terms of what can be done therapeutically toward quality-of-life improvement. It is also important that surgeons be aware of alternative therapeutic approaches for their patients made available by other members of the palliative care team. Last, being part of the palliative care team gives the surgeons an opportunity for interdisciplinary research. Some surgeons might feel, “I don’t do palliative surgery.” But it is nevertheless an important part of their practice. In a study at the City of Hope National Medical Center, almost 11% of general oncologic surgical procedures were done with a palliative care intent, not for cure.10 We performed a survey of the Society of Surgical Oncology that showed that, indeed, a majority performed more than 10% of their oncologic procedures for palliative intent, not for cure.11 Clearly, palliation is an important part of a surgeon’s role in the treatment of cancer. The survey also looked at education. Surgeons’ education related to palliative care was poor. Almost half of the surgeons (47.7%) in that group had no training in palliative care at all in medical school, 30.1% had no training in residency or fellowship, and 80% had 10 hours or less. Twenty-three percent of surgical cancer specialists, who have many patients who will ultimately succumb to cancer, had no continuing education in palliative care. There is hope. The focus on palliative surgery and palliative care is improving, as exemplified by the American College of Surgeons’ wish to support a task force on the subject, offering educational sessions such as the present one. Also, there is a new educational program called “Improving Residency Training in End-of-Life Care.” This is a resident training program designed by Dr David Weissman from the Medical College of Wis-

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consin, supported by the Robert Wood Johnson Foundation. Anyone involved with a residency program should become involved in this training program on palliative care. With regard to palliative surgical procedures, what are the most frequently indicated tumors as cited in the literature? They are esophageal (16%), followed by colorectal (14%), pancreatic (12%), and biliary cancer (7%).12 These cancers frequently present later in their course, with lower survival and less ability to cure. But the reality of what we have seen at the City of Hope was that the most common primary diagnoses requiring palliative procedures are, in fact, the most common tumors that we see: lung cancer, colorectal cancer, breast cancer, and prostate cancer. Quality of life as an oncologic surgical outcome

Historically, the focus on palliative surgery has not been on quality of life. In 1999 Miner and associates12 reviewed 7 years of published articles that discussed palliative procedures. In the review only 17% had any kind of outcomes measurement dealing with quality of life. Only 12% had any information on pain control. The most important outcomes measures in the surgical literature for palliative care have been physiologic response, survival, and morbidity and mortality. For example, a recent article entitiled “The Value of Palliative Resection in Gastric Cancer” concludes with the statement, “Palliative resection may be beneficial for patients under 70 years of age if the tumor is restricted to one metastatic site.”13 Its results demonstrate a survival benefit for the select patient subgroup who underwent palliative gastric resection. But in the Patients and Methods section, the authors state, “Data on quality of life and duration of intensive care unit stay were not registered in the Dutch Gastric Cancer Trial.” Interestingly, the published paper evaluating the value of palliative gastric cancer operations does not have any information on quality of life. There has been recent improvement in the literature on the quality-of-life data after cancer operations. In an article from Spain showing the impact of surgical procedures for gastric cancer on quality of life, the authors use a quality-of-life tool for data collection14: the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). Using this validated tool for assessing postoperative symptoms for gastric cancer, the study showed there is

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no major difference or impact on overall quality of life based on the type of procedure. Investigators from Johns Hopkins University have studied quality-of-life outcomes from pancreaticoduodenectomy.15 They used a tool, the City of Hope Medical Center Quality of Life Survey, which separates quality of life into physical, social, spiritual, and psychologic well-being domains. Another recent article with good study design compares low anterior resection with abdominal perineal resection in low rectal cancers.16 The authors used a general quality-of-life instrument, the SF 36, which is perhaps the most commonly used instrument to measure quality of life. In addition, they used a symptomspecific quality-of-life instrument, the Fecal Incontinence Quality of Life Scale. In this article the data showed little overall difference in the two procedures. It is a major advance that the surgical oncologic literature has started to evaluate detailed quality of life as an endpoint for patients. Palliative surgical goals and options for oncologic patients

What are the goals of palliative surgery? Our survey of the Society of Surgical Oncology revealed that the major goals are not only symptom relief and pain relief, but also to maintain independence and function, minimize burden of care, and symptom avoidance. Determination of the goals of therapy involves accurate prognostication. Prognostication of a cancer patient is a difficult problem and often poses a clinical dilemma. We base the determination on multiple criteria, such as bulk of tumor, performance status, mental status, dyspnea, and age. Also, one must ask the question, “What is the chance the patient will survive the operation and leave the hospital?” This involves consideration of the comorbid conditions of the patient. Perhaps most difficult is the question, “Can the patient have a meaningful quality of life after an operation?” To answer this question we have to understand the patients and their families in terms of what is meaningful to them. Indications for palliative surgery include hormonal manipulation (eg, orchiectomy for prostate cancer), relief from malignant fluid reaccumulation, treatment of obstructions of many different organs (eg, bowel, bile duct, and urinary tract), tumor resection, bleeding control, prevention of local symptoms, and pain control.17 There is always a tradeoff involving palliative surgery

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in terms of risks and benefits. The benefit should always be focused on improving quality of life. But there will frequently be a secondary benefit of increased survival. For example, if a patient with malignant bowel obstruction undergoes an operation to relieve the obstruction, the patient will likely live longer unless there is a morbid complication, a risk to the procedure. Morbidity rates can be high after an operation in patients with terminal cancers. Patients may end up staying in the hospital longer and suffering more pain, and mortality may be relatively high. In our retrospective study at the City of Hope Medical Center, a 12.2% 30-day mortality rate was observed in cancer patients undergoing palliative procedures. Morbidity and mortality risks were related to the treatment options.10 Minimally invasive surgical techniques

Minimally invasive surgical techniques occupy an important place in the armamentarium of palliative surgery because they optimize qualify of life after operative procedures. They include sentinel node mapping, ablative tecnhiques, laparoscopy for diagnostic purpose (eg, for pancreatic cancer), drains, and shunts. For example, in a patient with pancreatic cancer, one can perform a laparoscopic exploration. If the surgeon sees that there is unresectable disease, he may avoid a major open exploration. The patient can possibly go home the same day. With proper skill, there are bypasses, lysis of adhesions, drains, shunts, and other procedures that can be performed with minimally invasive surgical techniques. Sentinel node mapping is a procedure that aims to improve postoperative quality of life. It leads to focused evaluation and detection of micrometastatic disease, but it may be performed as an outpatient procedure under local anesthesia. Importantly, it may avoid the complications associated with elective lymph node dissections in patients who do not have nodal masses. One can recommend targeted lymph node dissections to avoid complications that will be undesirable, related to tumor growth in the lymph node basins. Radiofrequency ablation has gained popularity and it can be done percutaneously or laparoscopically. The procedure uses electrodes to heat tissue and to destroy tumor cells. One can cauterize needle tracks, so the procedure can be performed with low morbidity. Many different potential uses exist. The liver is the most common site of ablation, but it is used increasingly for lung, kidney, and painful bony metastases.

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Open surgical approaches

There are many open operative approaches: resections, debulking, reconstructions, bypass procedures, and surgical tube placements. One example would be an operation for malignant bowel obstruction. Up to 50% of obstructions may be inoperable, and there are many potential contraindications to operations when the patient will likely have a poor outcome. Examples of contraindications include the presence of ascites, carcinomatosis, multiple sites of obstruction, palpable intraabdominal mass, overwhelming disease, and poor clinical status. There are many different approaches to malignant bowel obstruction. Lysis of adhesions may be frequently seen in a terminally ill patient, especially in cases of benign cause of obstruction. Other surgical options include resection of obstructed segment, bypass, ostomy, gastrostomy, and extensive debulking. Recurrence of obstruction occurs with high frequency, up to 50% of the time. Morbidity in these procedures also may be higher than 40%, and mortality is significant as well, between 5% and 32%. The quality of life improvement may be quite variable, between 42% and 85%. Another example is hepatic debulking of carcinoid tumors. For patients who have carcinoid syndrome with flushing and diarrhea, a debulking can lead to systemic responses, such as decrease of these symptoms and improved response to medical therapies. There are also minimally invasive debulking techniques available, including radiofrequency ablation and hepatic artery embolization. Nonsurgical approaches

We should always be aware of alternative invasive treatments, and work closely with interventional radiologists. They can perform radiofrequency ablation, chemoembolization, and percutaneous drainage. We should also work with pain specialists and explore the many options they offer to our patients, such as continuous pain infusion pumps, nerve blocks, and ablations. Endoscopists also provide options for patients with incurable cancers, using laser, stents, and photodynamic therapy. Photodynamic therapy is an option to remember. Giving a photosensitizer, which is preferentially taken up by tumor cells, the technology transforms molecular triplet oxygen into singlet oxygen with light, and leads to local toxicity. There is no toxicity to areas unexposed to light. The technique has been used for various tumors, such as esophagus, bronchus, bile duct, and rectal tumors.

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There are other nonsurgical approaches. Radiation therapy is used for many different disease processes, such as splenomegaly, bleeding, pain, and malignant rectal obstruction. For splenic irradiation, especially in chronic lymphocytic leukemia, one may have traumatic responses, although typically everything is quite short lived. So one must also base decisions on the life span of the patient. Medical therapy may be helpful in select cases of malignant bowel obstruction, pain management, and hormonal manipulation. In carcinoid syndrome, initial options include administration of somatostatin; it frequently will work. One can prescribe very high doses of somatostatin, although it may be short lived as well. Interferon is an option, although it is fairly difficult to tolerate. Chemotherapy is probably not a good option. In conclusion, a broad spectrum of palliative procedures is a very important part in the practice of surgical oncology. It is imperative to focus on quality of life outcomes for patients with advanced cancer. Palliative surgery should be a focus of surgical education. We, as surgeons, have much to offer the patient facing the end of life. As long as realistic goals of the patient and the family are identified, all treatment modalities should be considered. It is important to be part of the palliative care team, at least as a resource. It is also important to consider all options to improve the quality of life, maintaining followup because the evolution of the disease may change. Continuity of care and avoidance of abandonment is important. Last, one must keep in mind the importance of integrative approaches to quality-of-life research. Dr Lee: There is one more topic that we need to discuss before we move on to the case presentations. Ms Mary Baluss will discuss legal considerations, about which many concerns and fears about palliative care continue to pose mental barriers for surgeons. Ms Baluss is the founder of the Pain Law Initiative, a public interest law firm that aims to improve public access to palliative care. She is also chairperson of the Maryland Pain Initiative.

LEGAL FOUNDATION AND PROTECTION FOR PALLIATIVE CARE Ms Mary Baluss, JD Because we have only brief time, I will address primarily two issues. One is fear—the legal fear—around accusa-

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tions of euthanasia. The other concerns some of the legal issues involved in withdrawing and withholding lifesustaining care, in terms of who makes the decisions. Definitions

“Physician-assisted suicide” is a situation in which a patient asks a doctor for help in dying, and the doctor agrees. The doctor provides medication but does not administer it. It is illegal in every state in the United States except in the state of Oregon. “Euthanasia” is the purposeful act of causing death that is a direct action by the physician, with or without the patient’s intervention. It is illegal in this country. “Palliative sedation” (also called “terminal sedation”) is the use of sedating drugs to take a suffering patient out of consciousness and let the disease take its course, whatever that course may be. Legal foundation for palliative care

The intent to ease pain and treat symptoms is neither illegal nor unethical, even if the unintended result is the patient’s death. American Medical Association ethical standards make it absolutely clear that a physician is obligated to provide palliative care even if the result might be a hastened death. In the law, two physicianassisted suicide cases in the Supreme Court have held that there was not a constitutional right, at least in the context of the cases presented, to entitle people to physician-assisted suicide.18,19 On those cases, the Supreme Court clearly distinguished palliative sedation— which it deemed ethical and legal—from assisted suicide. Several judges made it clear that one’s ability to obtain palliative sedation influenced their decision that physician-assisted suicide is not a right. Justice Souter stated, “The reasons. . .[for my position in Glucksberg]. . .also support the distinction between assistance to suicide, which is banned, and practices such as termination of artificial life support and death-hastening pain medication, which are permitted.”20 The Controlled Substance Act is occasionally raised as a point of concern for physicians. It should be noted that there is absolutely not a single Controlled Substance Act case involving palliative care. The Drug Enforcement Administration (DEA) has been very consistent in this, however misleading one may believe they are about prescriptions of opioids for chronic pain. I have not found any DEA regulatory cases. DEA Administrator

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Hutchinson openly supported palliative care at the American Pain Society last year. One may view the legal protection of palliative care through the “double effect,” although this is not necessary. If one believes that aggressive pain management will hasten death, its use can be analyzed as a matter of the double effect. The good end is intended, the bad outcome is not the means to the good end, and the bad effect may be inevitable. The double effect analysis, however, presumes that high-dose opioids are almost certainly going to cause death. In fact, as has been established in the literature, death does not occur in patients who chronically have been receiving opioids without the patient’s passing into sedation and unconsciousness first, well before the onset of apneic arrest. It may well be that fear of sudden respiratory depression has been significantly overstated. If so, what one has is an analysis based on beneficence. Since 1980, there have been only two reported prosecutions involving the use of opioids for palliative care.21,22 In both cases, careful analysis actually supports the delivery of appropriate palliative care. Stanley Narramore was an osteopathic doctor in Kansas who was indicated for murder because of suspicion that he removed an intubation without reversing the paralytic effect. He was also indicted for attempted murder because, in the case of an elderly woman who was in a great deal of pain and acknowledged to be dying, he said some things to the family that made them think that his intent was not to limit her pain, but actually to hasten her death. They transferred her from that hospital and she later died at another hospital with morphine, in fact with more morphine than Dr Narramore had intended to provide her. He was convicted on both counts, but the Kansas Supreme Court reversed his conviction. It is an important case because it held that at least in the criminal law setting, where there are two equally well-credentialed and believable expert witnesses, one of whom says, “Dr Narramore did no wrong,” and another says “Dr Narramore consciously hastened death,” the concept of reasonable doubt requires acquittal. The standard of care is that such cases must be established by expert medical testimony. When experts cannot agree on the standard of care, the jury cannot fail to have “reasonable doubt.” State versus Narramore has been followed in a few jurisdictions. A case in Utah involved an obstetrician who was very slow to abort a home birth and try to get

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the baby to the hospital. There are a few other cases where it has been alluded to, but not in terminal palliative care context. It seems to be well accepted by the courts that have considered it. In the Utah case of the State versus Weitzel, I actually participated somewhat in the defense. Dr Weitzel was indicted after the psychiatric nursing home deaths of five patients in a fairly short time. The prosecution refused to believe that the patients were terminally ill. And nobody believed that the patients were in pain. In fact, one of the state’s attorneys, who was also a nurse, said, “Of course, they were yelling and screaming, isn’t that what old people do?” So, Weitzel was convicted of manslaughter and negligent homicide. His conviction was overturned because of prosecutorial misconduct. At the second trial, a great effort was made to explain palliative care to the jury, showing that patients had complained of pain. It was demonstrated that when one has demented older people showing activities indicating pain, an important part of one’s differential diagnosis may well be to treat the pain and see what happens. There was no issue that the amounts of opioids the doctor used were unreasonable, only whether they were required. The jury acquitted Dr Weitzel after 40 minutes of deliberation. Documentation

One must protect oneself. The decision for palliative care must be documented, as must the clinical basis for the decision. This is the most important thing one can do. One must take a truly informed consent. The surrogate and the family must receive careful and detailed explanation by the surgeon, especially if the patient is not competent. Make sure the family understands that there are risks and benefits in pain management. One needs to maintain a respectful and compassionate attitude with the patient and the family. The surgeon must make sure that the family knows that he or she is on their side, and the intent is to ease the patient’s pain and suffering. Amazingly, such an attitude will significantly prevent future litigation. One must never, ever joke with the staff or the patient and family about opioids. One of the problems that Dr Weitzel incurred on himself is that he had a rather cynical manner, and he said insensitive things around the staff. Some of the nurses did not like him very much. The negative professional image worked against Dr Weitzel in the case. Most importantly, one must discuss pain and treat it

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as the disease progresses. Palliative care—easing pain and other symptoms—is not something one does at the last minute when death is imminent. If the discussion and treatment of pain has been part of the clinical process, there will not be the sudden flurry of concern and activity at the end of life. The state of Florida has a statute that requires physicians to bring up pain management at the time they provide the diagnosis of an eventually fatal or serious illness. The state seeks to assure the patient that pain will be treated. The statute only requires the doctor to talk about pain management; the legislature presumes the doctor would talk constructively and accordingly. Nobody has ever brought a case under the statute. Legal implications of egregious failure of palliative care

One needs to be mindful of potential liability when pain is inadequately treated. For many years, pain management was not a focus of any malpractice litigation simply because there was no standard of care. On the whole, pain was treated so badly that no one could get into trouble. Today that has changed. There are now the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) Pain Standards, requiring pain to be regarded as a fifth vital sign, requiring monitoring and treatment. There are the American Pain Society’s Guidelines for the Use of Opioids, the American Medical Association ethics, and many other guidelines and standards. They instruct a physician that it is both legal and ethical to treat the pain. These change the liability calculation, so that one may not want to fall below the standard of care by failing to treat pain adequately. Infliction of severe emotional distress

Two related torts that are not used much in medical cases are the intentional and negligent infliction of severe emotional distress. They are tailor made to legal action against mishandling of pain management or palliative care. In negligent infliction of emotional distress, a physician has a duty toward the patient that is violated. The violation causes bodily injury, which may include pain. In a case involving pain, we don’t have to go very far to make the legal connection. Bodily injury includes mental trauma that is more than merely transitory, ie, substantial enough to require treatment for nightmares, depression, and anxiety—all of which may be the sequelae of unmitigated pain. The injury, pain, is reasonably fore-

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seeable by the mistreatment. So failure to prescribe for someone in pain constitutes the injury. This requires proof by an expert witness that the injury occurred. The intentional infliction of emotional distress is a punitive tort. The plaintiff can receive punitive damages and attorney’s fees. This may be as appropriate as negligent infliction in situations where palliative care is not provided. This legal action requires extreme and outrageous conduct intentionally or recklessly causing severe emotional distress to the patient. At least one court has held that ignoring serious pain qualifies as intentional infliction of emotional distress. In such cases, the patient, the affected family members, and any other person who is present at the time of injury have standing to sue if such distress results in bodily harm. I had a case in Tennessee in which a doctor admitted a patient for palliative care and then disappeared without writing orders. The daughter had brought her Bible and her two teenage daughters to pray with grandmother, thinking that it was the last day of life. But grandmother, instead, was writhing in pain and screaming. That stopped only after asking repeatedly for a doctor, the daughter went out in the hall and started screaming herself. In that case, claims were filed for intentional infliction of severe emotional distress. Abandonment

Abandonment is probably the most common cause for patients to raise the specter of litigation against the doctor who provided terminal care. I get phone calls and people say, “I have been thinking about how Mom died.” They are very perturbed by the fact that the doctor was not there to adequately relieve pain when their loved ones died in extreme suffering. Following are some examples of abandoment. A situation involved a colleague of mine whose father was dying of cancer in California; the father’s doctor refused to return his patient’s phone calls. The doctor’s excuse was, “I don’t know anything more to do for you.” If one does not feel competent to treat pain, the patient should be referred to another doctor. In fact, in some states one is required to refer the patient when one’s own competence is exceeded. There was an oncologist in Mississippi who refused to write an opioid prescription for a 70-year-old man dying of metastatic cancer in pain. “Nobody is going to find a bottle of pills in the street with my name on them.” The case that many people have heard about occurred

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in California. The physician of a cancer patient was held liable for not treating pain. His defense was, “I just don’t believe she is really in that much pain.” Abandonment simply means neglect. It does not require that the relationship between doctor and patient be severed. It applies when a physician neglects a patient at a critical junction. Not all states require the “critical junction” element, but the last days or weeks of one’s life are clearly a “critical junction” by anyone’s standard. Many states also have statutes and medical board regulations on the subject of abandonment. Elder abuse

In 13 states, elder abuse is specifically defined as the failure to provide necessary medical care by a caregiver, including a hospital, a physician, or a nursing home. It has been held, in a case in California, that elder abuse extends to a failure to provide palliative care to a dying, elderly man who was in significant, dreadful pain. He reported pain levels of 9 to 10 every single day that he was in the hospital, but the doctor did not accept that the patient was in pain. That was an extreme example. I do not use these examples to scare anyone, but to demonstrate that these cases are extreme because they are such egregious departures from good care. Advance directive, health care power of attorney, and surrogacy

Any competent patient may refuse medical care, including life-sustaining treatment. The request must be honored, and the treatments must be withheld or withdrawn. But what is competent? Who decides if the patient is competent? It is the attending physician’s medical judgment that decides. For incompetent patients, advance directives, when present, speak for them and overrule the surrogates own opinions. One way to get the patients to willingly complete an advance directive or to sign a health care power of attorney is first to talk honestly about a debilitating disease early in the process. For the surgeons who first see the patient in later stages, the discussion should begin as early as possible in the relationship. For example, my doctor approached it with me recently. She said, “You know, there is going to be a time during your upcoming operation when you are going to be unconscious. Do you have a health care proxy?” I said, “No.” She said, “Well, you know, my husband and I have just done our advance directives and our health care proxies, and it was such a good experience for us to sit

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down and talk about our expectations. We know we won’t need these for years. We certainly hope we won’t. If you have done it, it helps.” This nonthreatening discussion resulted in my creating both an advance directive and a health care power of attorney. When there is no advance directive, the designated health care surrogate makes the decisions. Family members who disagree have no recourse other than to petition the courts to have the surrogate removed. The surrogate standard is always to follow the wishes of the patient, if known, and if not known, the best interests of the patient. The advance directive and power of attorney are statutory. This is mentioned as a reminder that although state statutes generally follow the model of Health Care Decisions Act, there are differences among various states. One should know the specific requirements for witnessing and signing advance directives in one’s own state. One must know whether or not the state imposes any limitations on a surrogate’s ability to direct the withdrawal of artificial feeding and hydration. In some states, these acts cannot be carried out unless the patient has specifically authorized it. It is important to pay attention to these specific statutes for each state, although the limits on withdrawal of artificial feeding and hydration are based on some fairly outmoded notions of what the treatments actually do for the patient. There is an important caveat about advance directives and powers of attorney that many people do not know. Even though these legal instruments have to be created in writing, they can be revoked verbally. This revocation is obviously something potentially fraught with ambiguity. The daughter says, “Well, last night when no one else was here, mom told me that she has changed her mind about the operation and appointed me the surrogate.” One should know his or her own state’s oral revocation requirements. But the most important thing to remember, because it is somewhat strange and contrary to what one would normally think, is that a patient does not have to be competent to revoke either an advance directive or a power of attorney. This is explicit in almost every statute. Without a power of attorney or advance directive, the state law, or, in some cases, the common law, dictates that surrogacy follows the order from spouse to children to siblings to more remote relatives in classes. In some states, such as in Colorado, the realities of scattered families and nontraditional living arrangements are taken

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into account. The state law permits a close friend, who actually knows the patient, to exercise surrogacy in preference to someone who has blood ties but no real relationship to the patient. This makes a great deal of sense and, particularly for partnerships, the progressive approach is very important. When there are differences between surrogacy class members, the states provide statutation. Some states want a majority of the class to decide. They do not explain what happens when the class is even-numbered. If a majority of the class cannot agree on what should be done, states may pass over the class of children who are squabbling and go on to the next class, the patient’s siblings. This is a reasonable method because one can tell the chidlren if they cannot get it together, the aunts and uncles are going to decide. Through it all, the best interests of the patient continue to govern the surrogate’s decisions. The preceding text, in a nutshell, is the law of palliative care. One must always remember, and it is important that the lawyers remember also, that there are many things the law cannot provide. Law is only the floor. Ethics provide the ceiling. We cannot make people get a power of attorney, but the SUPPORT study and other data have shown that physician involvement is essential. The physician has the best hope of obtaining advance planning documents early. They resolve difficult intrafamily disputes, but unfortunately they do not prevent subtle bullying by family members of a weak patient. Family members who are unable to let go may pressure a patient to have a procedure that might not be otherwise advised. A surgeon can have a great deal of influence in avoiding such unnecessary procedures in the best interests of the patient. To avoid ambiguities that the law does not resolve, frank conversations along the way with both the patient and the family are critical. They minimize the frantic, last minute speculations and disputes, for example, “Oh, my God, Mom is dying, what does she want?” It has been mentioned before that these conversations may proceed slowly. Nevertheless, it is better sometimes to have them directly. My goal is to make continuity of care and management of pain part of the continuum. It is critically important to not let pain management wait until one is sure that it cannot wait. In the end, providing good palliative care in the best interests of the patient is the best legal defense of all.

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Dr Lee: This completes the first half of the session consisting of formal presentations. The second half will consist of panel discussions with audience participation. Using a question-and-answer format, hypothetic cases will be presented to illuminate basic palliative care principles. (To be continued in the next month’s publication as Part 2.) Appendix Executive Group Surgical Palliative Care Task Force Division of Education American College of Surgeons Geoffrey Parker Dunn, MD, FACS, Erie, PA, Series Editor Timothy G Buchman, PhD, MD, St Louis, MO Karen Jean Brasel, MD, FACS, Milwaukee, WI Joseph M Civetta, MD, FACS, Farmington, CT Alexandra M Easson, MD, FRCS(C), Toronto, Ontario Daniel Benjamin Hinshaw, MD, FACS, Ann Arbor, MI Joan Lynn Huffman, MD, FACS, Upland, PA Robert Scott Krouse, MD, Tucson, AZ K Francis Lee, MD, FACS, Springfield, MA Laurence Edward McCahill, MD, FACS, Alhambra, CA Robert Alan Milch, MD, FACS, Buffalo, NY Anne Charlotte Mosenthal, MD, FACS, Newark, NJ Albert Reed Thompson, MD, FACS, Little Rock, AR REFERENCES 1. Torrance GW. Measurement of health state utilities for economic appraisal. J Health Econom 1986;5:1–30. 2. Sox HC, Blatt MA, Higgins MC, Marton KI. Medical decision making. Newton, MA: Butterworth-Heinemann; 1988. 3. Silvestri G, Pritchard R, Welch HG. Preferences for chemotherapy with advanced non-small cell lung cancer. BMJ 1998;317: 771–775. 4. Laboratory for Patient Informatics. Available at: http:// preferences.ucsd.edu. Accessed November 8, 2003. 5. Fox E. Predominance of the curative model of medical care: a residual problem. JAMA 1997;278:761–763. 6. Danis M, Mutran E, Garrett JM, et al. A prospective study of the impact of patient preferences on life-sustaining treatment and hospital cost. Crit Care Med 1996;24:1811–1817. 7. Kollef MH. Outcome prediction in the ICU. In: Curtis JR, Rubenfeld GD, eds. Managing death in the intensive care unit. New York, NY: Oxford University Press; 2001:39–57. 8. De Hennezel M. Intimate death, how the dying teach us how to live. [tr. Janeway CB]. New York: Alfred A Knopf; 1997:50. 9. World Health Organization. Cancer pain relief and palliative care: Report of a WHO expert committee. Geneva, Switzerland: World Health Organization; 1990:11. Technical Support Series No. 804.

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10. Krouse RS, Nelson RA, Ferrell BR, et al. Surgical palliation at a cancer center: incidence and outcomes. Arch Surg 2001;136: 773–778. 11. Society of Surgical Oncology Survey database. 12. Miner TJ, Jaques DP, Tavaf-Motamen H, Shriver CD. Decision making on surgical palliation based on patient outcome data. Am J Surg 1999;177:150–154. 13. Hartgrink HH, Putter H, Klein Kranenbarg E, et al. Value of palliative resection in gastric cancer. Br J Surg 2002;89:1438– 1443. 14. Diaz di Liano A, Oteiza Martinez F, Ciga MA, et al. Impact of surgical procedures for gastric cancer on quality of life. Br J Surg 2003;90:91–94.

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15. Huan JJ, Teo CJ, John TA, et al. Quality of life and outcomes after pancreaticoduodenectomy. Am Surg 2000;231:890–898. 16. Jess P, Christiansen J, Bech P. Quality of life after anterior resection versus abdominoperineal extirpation for rectal cancer. Scan J Gastroenterol 2002;37:1201–1204. 17. Markman M. Surgery for support and palliation in patients with malignant disease. Semin Oncol 1995;22(2 Suppl 3):91–94. 18. Vacco v. Quill, 521 US 793 (1997). 19. Washington v. Glucksberg, 521 US 702 (1997). 20. Souter J. Concurrent Opinion in Washington v. Glucksberg, 521 US 702 (1997). 21. State v. Narramore, Kansas, 1998. 22. State v. Weitzel, Utah, 2000.