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the graying of america: challenges and controversies • spring 2012 57 Physicians Should “Assist in Suicide” When It Is Appropriate Timothy E. Quill I n my career as a primary care physician and as a palliative care consultant, I have assisted many patients to die with their full consent. None of them wanted to die, and all would have chosen other paths had their disease not been so severe and irre- versible. To a person, none of these patients thought of themselves as “suicidal,” and they would have found that label preposterous and demeaning. In fact, the kind of personal disintegration that the label implies is just what is trying to be prevented by those choos- ing this possibility. 1 So on behalf of patients who have chosen this option, I reject the title of this debate as it unnecessarily tars the discussion with the sugges- tion of mental illness. In my primary care practice, I have also met many patients who were “suicidal” in the mental health sense of the word, and rest assured I have assisted none of them to die. In fact, I have at times had them involuntarily hospitalized to prevent them from carrying out their wishes. Admittedly there have been a few gray cases, where dying patients with severe irreversible illness also appeared to have mental illness that contributed to their readiness to die, and I have worked hard with my psychiatric colleagues to sort out what is being asked for and why before responding. But for the most part, genuine requests for assisted dying stem from irreversible, overwhelm- ing suffering toward the very end of life. I would there- fore reframe my position in this debate as: Physicians should (and do) appropriately assist (some) patients to die, but it is unevenly and unpredictably available. The potential “last resort” methods by which phy- sicians help patients to die are presented in Table 1. 2 Before exploring these methods in detail, it is impor- tant to contextualize the circumstances in which these questions usually arise. Let me begin by reinforcing that excellent palliative care should be the standard of care for all dying patients, and no patient should be medically assisted with a hastened death because she is not receiving the standard of care. Palliative care, if applied with skill and expertise, can address most, but not all, end-of-life suffering. So the first place to go if a person is requesting assistance in dying is to make Timothy E. Quill, M.D., is a Professor of Medicine, Psychia- try, and Medical Humanities at the University of Rochester School of Medicine and Dentistry. He is also the Director of the Center for Ethics, Humanities and Palliative Care and a Board certified palliative care consultant. Dr. Quill has pub- lished and lectured widely about various aspects of the doctor- patient relationship, with special focus on end-of-life decision making, including delivering bad news, nonabandonment, discussing palliative care earlier, and exploring last-resort options. Dr. Quill is a Fellow in the American College of Phy- sicians, an ABMS certified palliative care consultant, and a board member and President of the American Academy of Hospice and Palliative Medicine.

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Page 1: Assisted Sucide

the graying of america: challenges and controversies • spring 2012 57

Physicians Should “Assist in Suicide” When It Is AppropriateTimothy E. Quill

In my career as a primary care physician and as a palliative care consultant, I have assisted many patients to die with their full consent. None of

them wanted to die, and all would have chosen other paths had their disease not been so severe and irre-versible. To a person, none of these patients thought of themselves as “suicidal,” and they would have found that label preposterous and demeaning. In fact, the kind of personal disintegration that the label implies is just what is trying to be prevented by those choos-ing this possibility.1 So on behalf of patients who have chosen this option, I reject the title of this debate as it unnecessarily tars the discussion with the sugges-tion of mental illness. In my primary care practice, I have also met many patients who were “suicidal” in the mental health sense of the word, and rest assured I have assisted none of them to die. In fact, I have at times had them involuntarily hospitalized to prevent them from carrying out their wishes. Admittedly there have been a few gray cases, where dying patients with severe irreversible illness also appeared to have mental illness that contributed to their readiness to die, and I have worked hard with my psychiatric colleagues to sort out what is being asked for and why before responding. But for the most part, genuine requests for assisted dying stem from irreversible, overwhelm-ing suffering toward the very end of life. I would there-fore reframe my position in this debate as: Physicians should (and do) appropriately assist (some) patients to die, but it is unevenly and unpredictably available.

The potential “last resort” methods by which phy-sicians help patients to die are presented in Table 1.2 Before exploring these methods in detail, it is impor-tant to contextualize the circumstances in which these questions usually arise. Let me begin by reinforcing that excellent palliative care should be the standard of care for all dying patients, and no patient should be medically assisted with a hastened death because she is not receiving the standard of care. Palliative care, if applied with skill and expertise, can address most, but not all, end-of-life suffering. So the first place to go if a person is requesting assistance in dying is to make

Timothy E. Quill, M.D., is a Professor of Medicine, Psychia-try, and Medical Humanities at the University of Rochester School of Medicine and Dentistry. He is also the Director of the Center for Ethics, Humanities and Palliative Care and a Board certified palliative care consultant. Dr. Quill has pub-lished and lectured widely about various aspects of the doctor-patient relationship, with special focus on end-of-life decision making, including delivering bad news, nonabandonment, discussing palliative care earlier, and exploring last-resort options. Dr. Quill is a Fellow in the American College of Phy-sicians, an ABMS certified palliative care consultant, and a board member and President of the American Academy of Hospice and Palliative Medicine.

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sure she is getting the best possible palliative care.3 We also know that palliative care is unevenly available, and that there is an insufficient number of trained subspecialists to meet the need.4 Much unnecessary suffering can be relieved by helping patients who are not receiving standard palliative care gain access to

it. Furthermore, many physicians have not been ade-quately trained in basic pain and symptom manage-ment, and some are fearful of prescribing strong pain relievers because of the threat of regulatory oversight from the Drug Enforcement Agency. One way to help assure adequate palliative care toward the end of life is to refer patients to formal hospice programs which devote all of their energy and resources toward pallia-tion. Unfortunately, only about 30% of dying patients ever make it on to hospice, and for some of those 30% the referral is made for the last hours or days of life.5 So the first step in addressing a potential request for a hastened death is to ensure the adequacy of palliative treatments, and probably to advise enrollment into a formal hospice program. No one should choose to die from suffering that could have been relieved if clini-cians had the will and expertise.

Table 1

Potential Last Resort Options Available in the United States

Accelerating opioids for pain or dyspnea

Stopping or not starting potentially life-sustaining therapy

Voluntarily stopping eating and drinking

Palliative sedation

Physician-assisted death*

* legal only in Oregon, Washington and Montana

When it is asserted that we can relieve 100% of suf-fering with excellent palliative care, I believe it fright-ens people who have witnessed severe suffering of patients enrolled in hospice. Hospice does an excel-lent job addressing most suffering for most patients, but there is always a small number of hospice patients

whose suffering is severe despite the best efforts of a skilled, multidisciplinary team. Sometimes it is a par-ticularly vexing pain that does not respond to stan-dard treatment, and other times it might be dyspnea, nausea, vomiting, or foul smelling wounds; the list of potentially intractable physical symptoms can go on. Furthermore, if we are going to talk about suffering, these physical symptoms must be put in the context of other dimensions of experience such as psychic pain, social and economic challenges, and unresolved spiri-tual and religious issues. Eric Cassel reminds us that suffering patients do not have the luxury of separat-ing their “total pain” into physical and non-physical dimensions.6 The notion that hospice and pallia-tive care would have adequate answers to all of these dimensions of suffering for all patients flies in the face of data and personal experience.7 Hospice and pallia-tive care clinicians should try their best to address the many dimensions of their patients’ suffering, and bring in others with special expertise when needed. But a small percentage of dying patients will still experience suffering that can become intolerable and unaccept-able, and a subset of those will want assistance help-ing death come earlier rather than later. Clinicians can subtly or explicitly discourage patients from talking with us about these issues by labeling them as “sui-cidal,” or they can also approach these requests with expertise, compassion, and an open mind (which is what most patients and families are hoping for).

Three intersecting public policy questions are rel-evant here:

• How can access to and delivery of palliative care and hospice services be improved for all seriously ill and dying patients?

Excellent palliative care should be the standard of care for all dying patients, and no patient should be medically assisted with a hastened death because

she is not receiving the standard of care. Palliative care, if applied with skill and expertise, can address most, but not all, end-of-life suffering. So the first place to go if a person is requesting assistance in dying is to

make sure she is getting the best possible palliative care.

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• What responses should be clinically permitted to those infrequent, but troubling patients who are dying badly despite receiving excellent palliative care?

• Should individual clinicians respond in secret to these tough cases, or should public policy be cre-ated to more generally guide this response?

In my opinion, an open, legally regulated process sub-ject to safeguards is better for patients, their families, and the clinicians who care for them, as it would allow for far more predictability and accountability than our current approach. Let me begin with my perspective as a clinician. Because I have publically discussed these issues, I am a “safe person” for patients and families to talk to under these circumstances. Many people have seen difficult deaths in their own families or circles of friends. If they become stricken with a serious illness, they worry (usually in private) about what will happen to them if their suffering becomes intractable. Given the opportunity, many patients and their families want to talk about the kinds of deaths they have wit-nessed, and about what they are most afraid of.8 Those who know their physicians are open to discussing these issues and are committed to being responsive all the way through their illness to their death no matter what happens then have the freedom to worry about or work on other things.9 Most will not need any type of assisted death if they receive standard palliative care as a central part of their treatment plan. Data from Oregon are instructive here. One in six terminally ill Oregonians talk to their families about the possibility of an assisted death, while one in fifty talk to their phy-sician, and only one in one thousand actually die using the Oregon Death with Dignity Act.10 Most terminally ill patients want to talk about their options, but very few ultimately need a medically-assisted death even in an environment where it is legally permissible.

If clinicians are going to commit in the hypotheti-cal to helping patients die as peacefully and meaning-fully as possible if their suffering becomes unbearable in the future, then they must be prepared for how to handle the much smaller number of very troubling cases where intractable suffering leads to genuine requests for assistance in dying.11 Before responding to such a request, the first step should always be to carefully evaluate and explore the request to be sure it is fully understood. Why is it coming to the surface today? What makes the suffering so unbearable? What is the worst part? The many dimensions of potential suffering should be systematically explored to be sure all opportunities to assist the patient by intensifying the palliative plan are understood and considered. Is the patient having uncontrolled pain or other severe

physical symptoms, in which case the response might be an intensification of symptom management? If the patient’s family is no longer able to care for the patient at home, the response might be to arrange a respite stay or perhaps admission to a residential hos-pice facility? Perhaps the patient is wondering how a caring God could allow this to happen, and referring to an appropriate spiritual or religious advisor might be helpful. Or the patient may have become clinically depressed, so some combination of pharmacotherapy and counseling might be the best response. But in evaluating such requests, the clinician must keep an open mind that the patient may be seeing her situation clearly, and that reasonable ways to alleviate her suf-fering have already been considered, tried, and failed.

In such cases, the clinician should clearly document what has been explored and tried, and probably get a second opinion to ensure that there are no stones unturned. If the patient clearly understands her cir-cumstances and has tried all of the reasonable alterna-tives, the next step is to explore the last resort options with the patient and family, searching for the least harmful way to respond that respects the values of all the major participants including the clinician.12 The patient should be informed about any options that seem appropriate (provided she has the ability to com-prehend), as should the immediate family who also needs to make sense of any decisions that might be made. Ideally this process of deliberation around ways of responding should be carefully documented, and a second opinion considered if any of the last resort options are to be activated.

Last Resort OptionsTable 1 shows the main last resort options available in the United States in approximate order of acceptabil-ity.13 The options include the following.

Accelerating Opioids for Pain or Dyspnea Opioids are a mainstay of palliative treatment for both pain and dyspnea toward the end of life. The dose should be proportionate to the severity of the symptom. With usual pain management, the risk of sedation or respiratory depression is minimal. If such problems occur, they should be considered an adverse reaction and adjustments made accordingly. With accelerating pain or severe dyspnea toward the very end of life, genuine risks of hastening death by a small amount must sometimes be taken, but it is not the intended effect of the treatment, and the opioid dose is no longer increased once satisfactory relief is achieved. In this relatively infrequent circumstance, the rule of double effect is a relevant guide: (1) relieving severe pain is a legitimate goal of treatment with opioids;

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(2) one can foresee the risk of sedation or respiratory depression if doses have to be rapidly increased, but it is not the intent of the treatment; (3) the symptom must be proportionately severe to warrant the risk; and (4) death cannot be intended as a means to relieve the patient’s symptoms.14 The duty to relieve pain and dyspnea, even taking the risk of hastening death if the symptoms are severe at the end of life, has wide accep-tance in medicine.

Stopping Potentially Life-Sustaining TherapyWidespread agreement exists in the United States about a patient’s right to forego any life-sustaining therapy, provided he is fully informed, even if his wish is to achieve an earlier death. The justification of this practice comes mainly from the right to bodily integ-rity — patients have a right to determine what is done to their bodies, and any bodily invasion requires the patient’s permission. If the patient does not have cog-nitive capacity to decide, then family members can be empowered to use substituted judgment to make these decisions as they believe the patient would. The kinds of treatments that fall under this grouping include major life-prolonging therapies (e.g., mechanical ven-tilators, renal dialysis, hyperalimentation, implanted defibrillators), as well as simpler treatments (e.g., antibiotics, feeding tubes, intravenous fluids, ste-roids). Such treatments can be stopped once started if the patient’s condition changes, or not started at all, even if it is assured that the patient would live with the treatment and die without it, and even if the patient’s wish is explicitly to die sooner rather than later. These practices have widespread public and professional support.

Voluntarily Stopping Eating and Drinking Unlike the natural process of stopping eating and drinking that is a common part of the dying process as the usual bodily functions shut down, this practice is the result of an active patient decision to voluntarily stop eating and drinking while still physically capa-ble.15 In fact, the practice takes considerable patient resolve, as many patients still have relatively normal thirst and hunger drives that must be suppressed espe-cially in the early going. Patients also lose mental clar-ity as they become dehydrated and approach death, so there may be additional challenges associated with the later parts of the process which generally takes 1-2 weeks from initiation to death. Although patients could theoretically make this decision without the assistance of a physician, having physicians involved both in the initial evaluation and to help manage any associated discomfort that arises once the process is initiated is generally advised. Although this practice

is probably legal, the consensus about its ethical per-missibility is less uniform especially because death is directly intended by the patient.16

Palliative Sedation This practice usually involves the progressive use of sedation with benzodiazepines or barbiturates to relieve otherwise intractable physical symptoms in terminally ill patients.17 The more common practice is proportionate palliative sedation, where the level of sedation is systematically increased until sufficient relief of suffering is achieved. With this practice, the sedation is taken to the minimum level needed to achieve symptom relief. If the patient is rendered unconscious, it is only because lesser levels of sedation were insufficient to achieve sufficient relief. A related but distinct practice, palliative sedation to uncon-sciousness, is more controversial because sedation to unconsciousness is the intended endpoint from the beginning because the patient and physician believe that lesser degrees of sedation would very likely be insufficient. With these practices, usually (but not always) artificial hydration and nutrition are simul-taneously withheld. Palliative sedation can be con-sented to by the patient with capacity prior to initia-tion, or by surrogate decision makers if the patient lacks capacity. Palliative sedation, even to the point of unconsciousness, was cited as acceptable in the 1997 Supreme Court decisions addressing physician-assisted death,18 but the more unconsciousness is part of the intended outcome, the less consensus there is about the practice.19

Physician-Assisted Death [PAD] (Also Called Physician Aid-in-Dying or Physician-Assisted Suicide) Here the physician provides the means for a patient to potentially end their life (usually a prescription for bar-biturates) that patients must take by their own hand if they choose to end their life. For many, the possibility of an escape is extremely important, so the presence of a prescription or the promise to provide one if needed in the future can be an important comfort in itself that may never be activated.20 Although the patient must be able to take the medication independently by his or her own hand, the prescribing physician is morally and legally responsible as an accomplice. There is an underground practice across the country of physician-assisted death which is not vigorously scrutinized as long as it is kept secret.21 PAD was legalized by refer-endum in Oregon in the mid 1990s, and there are now 11 years of data studying the practice. PAD was also legalized by referendum in the state of Washington in 2008,22 and it is currently permitted in Montana since 2009 based on case law.23

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11 Years of Data from Oregon Data describing the practice of physician-assisted death in Oregon have been published each year since the law was activated, and are available online at <http://www.oregon.gov/DHS/ph/pas/>. These data help us address several important questions about the potential impact of legalization.

1. Will there be many patients, especially those from vulnerable groups? Overall PAD accounts for less than 0.2% of all deaths, or about 1/1000 Oregonians who die each year. 97.5% of patients were white, and 98.7% had health insurance. As a group, they tended to be highly educated. 82% had cancer, and all had terminal illnesses (mainly cancer and ALS). Reviewed records demonstrated long battles against their underlying illnesses. Only 2.8% cited financial concerns about treatment as a significant factor in their decision.

2. Would patients choose assisted death if they had access to good palliative care? The vast majority of patients were insured (98.7%), and 87.7% were enrolled in hospice. Those who were not in hospice still had access to it, but had cho-sen not to enroll.

3. Will requests for assisted death come from potentially controllable pain? Inadequate con-trol of pain or concern about pain was cited as a factor in 24% of PAD patients, and it was never cited as the sole factor. A group of matched controls of dying patients cited poor control of pain in 35% of cases, so PAD patients as a group had better pain control than non-PAD patients. The prevalence of uncontrolled pain is consis-tent with many other studies which show better pain control for patients on hospice than those receiving usual care, but even the hospice group had a substantial subpopulation with uncon-trolled symptoms in all studies.24

4. Do patients who choose this option have an excessive need to control their future?25 PAD patients represent a distinct group with high concerns about autonomy (90%), inability to engage in enjoyable activity (87%), loss of dig-nity (84%), loss of control over bodily functions (59%), and burden on caregivers (38%).26 In comparison to terminally ill controls who did not choose PAD, 21% of patients had severe loss of function prior to death in the PAD group compared to 84% of the non-PAD group. Whether such needs are labeled as “excessive” or “heroic” may depend more on the labeler’s

view of the practice than on the individual involved. For example, when similarly situated patients choose to not initiate or to discontinue a mechanical ventilator, we often view them as “heroic” or “strong willed” because there is more consensus about the permissibility of these actions.

5. Will legalizing PAD undermine improve-ments in palliative care and hospice? Data from Oregon suggests that the opposite may be true.27 Compared to other states, Oregon appears to have a very high percentage of deaths at home (where most people would prefer to die), high rates of hospice referral, high opioid prescribing rates per capita, and a state-wide DNR/DNI policy (the Physicians Orders for Life-Sustaining Treatment or POLST program), which has been the model for much of the rest of the country.28 Legalization of PAD has also been a wake-up call for physicians, who now frequently attend palliative care and hospice training programs knowing that they must be experts at basic palliative care if they are to be responsive to the more challenging patients who want to discuss PAD.29

6. Is the assessment of patients who are requesting PAD substantially different from those who are considering other last resort options? The assessment of patients who are having a pain crisis is clearly different from the other group of last resort options in that the cli-nician’s intent is to relieve suffering, and death if it comes earlier is clearly unintended. Acts such as stopping a life support, voluntarily stopping eating and drinking, and terminal sedation have the potential for more ambiguous intent, espe-cially if the patient is partly or largely motivated by a desire to escape suffering by achieving an earlier death.30 All such patients should be put through a similar screening process to make sure that the clinician understands the timing of the request, and to look for alternative ways to relieve suffering.31 It is only when the assess-ment demonstrates that there are no good alter-natives that the clinician can then begin to look at the best (or perhaps the “least worst”)32 last resort option that addresses the patient’s par-ticular situation.

Ethical Comparisons among PracticesSeveral ethical principles may differentiate between these last resort practices. The rule of double effect (RDE) defined above puts a lot of weight on the sin-gularity and purity of the physician’s intention.33 If

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the physician’s intent is exclusively to relieve suffering and not at all directed toward hastening death (which can be foreseen but not intended), then the act is per-missible. If there is any portion of physician inten-tion directed at hastening death, even if that is being requested by the patient, then the same act might be outside the boundaries of permissibility according to RDE. Clinicians for whom such pure intention is a critical moral underpinning may use this doctrine to

justify using large doses of pain medication if needed to relieve terminal suffering.34 But at other times RDE may force patient and family to be less than honest with the physician in order to protect the illusion about intent when in reality their motivations are not so simple.35 RDE is potentially relevant for aggressive pain management and for proportionate palliative sedation, but it is not nearly as applicable to cessation of life supports, voluntarily stopping eating and drink-ing, or PAD.

The active/passive distinction is also important to some clinicians and ethicists.36 Actively hastening death by giving a patient an overdose would not be permitted, but passively assisting by discontinuing a life-sustaining therapy and “allowing nature to take its course” would be allowed. The right to bodily integ-rity allows one to avoid invasive treatment even if that treatment would be assuredly effective in prolonging life and even if the patient’s wish is for an earlier death. However, if a patient wanted a direct (active) treat-ment intended to hasten death, such treatment would not be permitted. This distinguishes acts of omission (permitted) from acts of commission (not permitted). Of course, if a clinician took a patient off of a life sup-port without his consent, then the argument that he was passively “letting nature take its course” would be absurd, so there are clearly aspects of consent that are more central than the inherent “active” or “passive” nature of the acts.

More relevant in justifying and distinguishing between these acts are the concepts of voluntariness

and of proportionality. Voluntariness suggests that the patient’s will should guide the process as much as possible. If the patient does not have decision-making capacity, what is known about the patient’s will (sub-stituted judgment) should then be the guide. Two of the last resort options, voluntarily stopping eating and drinking and PAD, require a fully capacitated patient since both require that the patient initiate and carry through aspects of the process with a strong sense of

individual will. The other last resort options, acceler-ating pain relief for severe pain, cessation of life sup-ports, and/or palliative sedation, may be initiated by surrogate decision makers as long as they have a clear notion about what the patient would want under the circumstances.

The voluntariness of the clinician also needs to be respected, since she too must make peace with the act after it is carried out if she is a collaborator. Clini-cians who care for seriously ill patients should think through which of these last resort options they can and cannot provide. If asked, clinicians should inform the patient and family up front about what they can and cannot do so patients can make other arrange-ments if their clinician cannot offer legally permitted options (the first four are legally permitted through-out the United States, whereas PAD is only openly available in Oregon, Washington, and Montana). It may be permissible to arrange for other physicians or consultants to carry out these options as well. Clini-cians should stretch their willingness to be respon-sive to such patients without violating their own fundamental personal values. If a clinician is morally opposed to PAD, especially if living in a jurisdiction where it is legally permitted, then she should inform the requesting patient and, if desired by the patient and family, discuss which last resort options she can provide in the setting of intolerable suffering to see if that approach is acceptable. If common ground can-not be found, then helping the patient and family find an alternative clinician is generally recommended.

Two of the last resort options, voluntarily stopping eating and drinking and PAD, require a fully capacitated patient since both require that the patient

initiate and carry through aspects of the process with a strong sense of individual will. The other last resort options, accelerating pain relief for severe

pain, cessation of life supports, and/or palliative sedation, may be initiated by surrogate decision makers as long as they have a clear notion about

what the patient would want under the circumstances.

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Proportionality suggests that if last resort options are being seriously explored, the patient’s suffering should be significant and not adequately addressed by standard palliative measures. The nature of the patient’s suffering should be fully understood, as should why it is experienced as being so unaccept-able that a potentially life-ending intervention is being considered. The less palpable, immediate, and medically unresponsive the suffering, the more hesi-tation the clinician should experience about offering last resort options. If there is doubt, second opinions should be obtained. The reasons why any of these options is being chosen should be clearly understood and documented.

Finally, sometimes clinicians may experience a con-flict of duties in these deliberations. On the one hand, the obligation to be responsive to a patient who is suf-

fering severely, not responding to standard treatment, and making a compelling request should be given sig-nificant weight. On the other hand, duties to obey the law and/or to not violate important personal moral codes must also be fully considered. Clearly the best solution is to find a way to respond that respects the law and the moral codes of all the central participants, and simultaneously allows an adequate response to the patient’s dilemma. For that reason, all physicians who care for seriously ill patients should be aware of all of these last resort options. Sometimes clinicians may choose to break the law by secretly providing PAD for their patient who has a compelling need, especially if it does not violate their personal moral codes. If they do so in secret, society tends to look the other way, but only when everyone makes a pact not to discuss the experience. Such externally enforced silence can potentially lead to bereavement problems for all involved. Not abandoning the patient and fam-ily at this critical junction by carefully and creatively searching for common ground to maintain respon-siveness should take precedence over other consider-ations under these difficult circumstances.37

Open, Legally Permitted Versus Secret PracticesIn my opinion, the advantages of an open, legally per-mitted practice clearly outweigh the risks of a secret practice, as safeguards and open deliberation are the best way to balance responsiveness, predictability and protection against error, abuse, and coercion. First and foremost, such patients must be receiving state-of-the-art palliative care before any last resort option is activated. We know that palliative care is unevenly available, so a formal consultation and evaluation by trained palliative care clinicians should be part of the evaluation. Referral to hospice can also help if it has not already been done, since hospice is our pre-miere end-of-life program.38 Second, ensure that the patient’s own will and values are in the center of the decision-making process, even if he no longer has

capacity. Again, palliative care and possibly psychiatric consultation may be helpful in complex cases where capacity is uncertain.

Safeguards should be defined that bal-ance flexibility and accountability, as well as privacy and oversight. At our institution, if a patient is being taken off of a life support or provided with palliative sedation, the medi-cal record will contain information about treatments that have been tried, alternatives explored, why the decision is coming up now, and exactly what will be done to make

the patient as comfortable as possible. If a similarly situated patient was considering a physician-assisted death, not only would there be no documentation, but there would likely be no second opinions and the depth of exploration would be limited to one physi-cian, the patient, and possibly close family members. In Oregon, Washington, and Montana, the delibera-tive process for PAD is now more in line with other last resort practices than in the rest of the country. When the process of PAD was studied in states where it is illegal, elaborate protections had to be designed (analogous to studying child abuse) so that physician respondents would feel secure anonymously telling a small portion of the reality of their experience.39

Safeguards for these practices should include the following:

• Standard palliative care alternatives tried and found ineffective or unacceptable;

• Rigorous informed consent (only the patient him- or herself could consent to PAD or vol-untarily; stopping eating and drinking; family members could potentially consent using substi-tuted judgment the other options);

• Diagnostic and prognostic clarity;

In my opinion, the advantages of an open, legally permitted practice clearly outweigh the risks of a secret practice, as safeguards and open deliberation are the best way to balance responsiveness, predictability and protection against error, abuse, and coercion.

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• Independent second opinion by someone with expertise in palliative care; and

• Documentation and review.

PAD is the only last resort option currently governed by a tacit “policy” that the practice will remain techni-cally illegal, but covertly tolerated as long as the act is not officially reported. The risks of this approach are clear. First and foremost, no safeguards are in place to ensure the adequacy of evaluation. (I am a safe clinician that other physicians call on when they are considering assisting someone with PAD, and I am almost always able to find other ways to help either with intensification of standard palliative measures, or by exploring other last resort options.) Clinicians are very fearful about the law and the Drug Enforcement Agency,40 and most have not had adequate training in palliative care.41 In a secretive environment, these fears and potential blindspots may lead to premature move-ment toward last resort options when standard pal-liative care might have been sufficient. Second opin-ions by trained palliative care consultants are critical. Second, this policy discourages explicit conversation. The risks of miscommunication are profound. If a clinician says “don’t take too much of this or it could kill you”, is she sending a covert message about how to conduct PAD or is it a genuine warning about side effects? Conversely, if patients are afraid to tell clini-cians about their true plans and thoughts about end-ing their lives because they fear being labeled as “sui-cidal,” then opportunities for clinicians to be helpful in other ways may be lost. Thirdly, access to all of these last resort options is uneven and unpredictable. The assistance one can access at this critical junction may be determined in part by the main treating physician’s palliative care knowledge, but also by her views about the law and her willingness to take a legal risk on her patient’s behalf. Finally, if a patient is assisted in an uncertain legal environment, then both the clinician and the family have a major secret to carry with them, which may complicate bereavement and color the next time they face such a situation.

Being explicit and open about how we respond to these difficult cases will have several positives. First it acknowledges a very real problem — that although pal-liative care is highly effective, some patients still expe-rience severe suffering toward the end despite our best efforts. Knowing that we admit our limitations and are committed to finding effective solutions is very reas-suring to patients and families who have witnessed or are fearful about severe suffering. It allows patients to spend their precious time and energy on other mat-ters without worrying that we will not respond if their suffering becomes intolerable in the future. Second,

it reinforces the imperative for physicians to remain responsive to those patients who need our help the most at the very end. The vast majority of patients will not require last resort options if they receive excel-lent palliative care, but some will. Clarity about what options are available and under what circumstances helps us reinforce the requirement not to abandon patients at such a crucial juncture, and requires that we work together to provide the best possible response to the worst possible circumstances.42 We clearly can do that better working together in the open utilizing the expertise of a wide range of clinicians than we can by responding as individuals under a shroud of secrecy and ambiguity, or even worse turning our backs.

References1. E. J. Cassell, “The Nature of Suffering and the Goals of

Medicine,”New England Journal of Medicine (1982): 639-645. 2. T. E. Quill, B. Lo, and D. W. Brock, “Palliative Options of Last

Resort: A Comparison of Voluntarily Stopping Eating and Drinking, Terminal Sedation, Physician-Assisted Suicide, and Voluntary Active Euthanasia,” JAMA 278 (1997): 1099-2104.

3. T. E. Quill, Doctor, “I Want to Die. Will You Help Me?” JAMA 270 (1993): 870-873.

4. R. S. Morrison and D. E. Meier, “Clinical Practice. Palliative Care,” New England Journal of Medicine 50, no. 25 (2004): 2582-2590.

5. G. Gazelle, “Understanding Hospice - An Underutilized Option for Life’s Final Chapter,” New England Journal of Medicine 357 (2007): 321-324.

6. See supra note 1.7. T. E. Quill et al., “The Debate over Physician-Assisted Suicide:

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10. S. W. Tolle et al., “Characteristics and Proportion of Dying Oregonians Who Personally Consider Physician-Assisted Sui-cide,” Journal of Clinical Ethics 15 (2004): 111-118.

11. See Quill, supra note 3.12. See Quill et al., supra note 2; T. E. Quill, B. Coombs-Lee, and

S. Nunn, “Palliative Options of Last Resort: Finding the Least Harmful Alternative,” Annals of Internal Medicine 132 (2000); T. E. Quill and I. Byock, “Responding to Intractable Terminal Suffering: The Role of Terminal Sedation and Voluntary Refusal of Food and Fluids. ACP-ASIM End-of-Life Care Consensus Panel,” Annals of Internal Medicine 132 (2000): 408-414.

13. Id. 14. T. E. Quill, R. Dresser, and D. W. Brock, “Rule of Double

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15. See supra note 12.16. L. A. Jansen and D. P. Sulmasy, “Sedation, Alimentation,

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17. T. E. Quill et al., “Last-Resort Options for Palliative Sedation,” Annals of Internal Medicine 151, no. 6 (2009): 421-424.

18. Vacco v. Quill. 1997, Supreme Court; Washington v. Glucks-berg. 1997, 117 S.Ct 2258.

19. See Jansen and Sulmasy, supra note 16; B. Lo and G. D. Rubenfeld, “Palliative Sedation in Dying Patients,” JAMA 294 (2005): 1810-1816.

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20. T. E. Quill, Death and Dignity: Making Choices and Taking Charge (New York: W.W. Norton and Co., 1993): 1-255; T. E. Quill, Death and Dignity: A Case of Individualized Deci-sion Making,” New England Journal of Medicine 324 (1991): 691-694.

21. D. E. Meier et al., “A National Survey of Physician-Assisted Suicide and Euthanasia in the United States,” New England Journal of Medicine 338 (1998): 1193-1201.

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25. T. A. Schroepfer, N. Hyunjin, and M. Kavanaugh, “The Myriad Strategies for Seeking Control in the Dying Process,” Geren-tologist 49 (2009): 755-766.

26. R. A. Pearlman and H. Starks, “Why Do People Seek Physician-Assisted Death?” in T. E. Quill and M. Battin, eds., Physician-Assisted Dying: The Case for Palliative Care and Patient Choice (Baltimore: Johns Hopkins University Press, 2004): 91-101; A. L. Back et al., “Physician-Assisted Suicide and Euthanasia in Washington State: Patient Requests and Physician Responses,” JAMA 275 (1996): 919-925.

27. M. A. Lee and S. W. Tolle, “Oregon’s Assisted Suicide Vote: The Silver Lining,” Annals of Internal Medicine 124 (1996): 267-269.

28. S. E. Hickman et al., “Use of the Physician Orders for Life-Sustaining Treatment (POLST) Paradigm Program in the Hos-pice Setting,” Journal of Palliative Medicine 12, no. 2 (2009): 133-141; D. E. Meier, “POLST Offers Next Stage in Honoring Patient Preferences,” Journal of Palliative Medicine 12, no. 4 (2009): 291-5.

29. See supra note 27. 30. See Jansen and Sulmasy, supra note 16; T. E. Quill, “The Ambi-

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31. See supra note 3. 32. M. P. Battin, The Least Worst Death Essays in Bioethics on the

End of Life (New York: Oxford University Press, 2004).33. See Quill, Dresser, and Brock, supra note 14.34. T. E. Quill, “Principle of Double Effect and End-of-Life Pain

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35. See supra note 30.36. J. Rachels, “Active and Passive Euthanasia,” New England

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41. See Morrison and Meier, supra note 4.42. See Quill and Cassel, supra note 9.