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Medical Ethics |

Aid in DyingAid in Dying: Guidance: Guidance for an Emerging End-of-Life Practice FREE TO VIEW

Kathryn L. Tucker, JD
Author and Funding Information

From Legal Affairs, Compassion & Choices, Denver, CO, and Loyola Law School, Los Angeles, CA.

Correspondence to: Kathryn L. Tucker, JD, Legal Affairs, Compassion & Choices, PO Box 101810, Denver, CO 80250; e-mail: ktucker@compassionandchoices.org

Financial/nonfinancial disclosures: The author has reported to CHEST that no potential conflicts of interest exist with any companies/organizations whose products or services may be discussed in this article.


Reproduction of this article is prohibited without written permission from the American College of Chest Physicians. See online for more details.


Chest. 2012;142(1):218-224. doi:10.1378/chest.12-0046
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Patients approaching death because of terminal illness may find themselves trapped in a dying process they find unbearable, even with excellent pain and symptom management. Some will want the option of aid in dying. Aid in dying is the practice of a physician writing a prescription for medication for a mentally competent, terminally ill patient that the patient may ingest to bring about a peaceful death. The practice is increasingly accepted by physicians, and it is likely that a growing population of patients will inquire about it. Data from states that give terminally ill patients a statutory right to aid in dying demonstrate that the practice improves end-of-life care. Therefore, it is timely for clinical practice guidelines to emerge to offer guidance to physicians willing to provide aid in dying.

Modern medicine can extend the dying process so long that some terminally ill patients may find the process unbearable and will want to precipitate a peaceful death by ingesting medication for that purpose. Aid in dying is the practice of a physician writing a prescription for medication for a mentally competent, terminally ill patient that the patient may ingest to bring about a peaceful death. The American Medical Women’s Association (AMWA), for example, adopted a policy in 2007 that stated the following:

AMWA supports the right of terminally ill patients to hasten what might otherwise be a protracted, undignified, or extremely painful death. AMWA believes the physician should have the right to engage in practice wherein they may provide a terminally ill patient with, but not administer, a lethal dose of medication and/or medical knowledge, so that the patient can, without further assistance, hasten his/her death. This practice is known as Aid in Dying.1

In the past, this practice was often referred to as “physician-assisted suicide,”2 but the term has been rejected as inaccurate and pejorative by a growing number of medical and health policy organizations.3

Many physicians who care for dying patients have participated in aid in dying.48 However, the understanding of the practice varies. Studies show that many physicians are uncomfortable with having conversations that address end-of-life choices, including how to respond to requests for aid in dying. It is timely for clinical practice guidelines to emerge to give guidance to physicians willing to provide this option to their patients.

The goals of this article are as follows:

  • 1. To raise clinician awareness of the legal, ethical, and medical principles pertaining to aid in dying.

  • 2. To highlight the importance of proactive communication in order to minimize suffering as the end of life nears.

  • 3. To encourage the promulgation of clinical practice guidelines for responding to patient requests for aid in dying.

Some basic principles and precedents are pertinent.9

  • •A patient with decision-making capacity has the legal right to refuse or request the withdrawal of any medical treatment or intervention, regardless of whether he or she is terminally ill and regardless of whether the treatment prolongs life and its withdrawal results in death.

  • •A patient with decision-making capacity has the legal right to request and receive as much pain medication as necessary for relief, even if it advances the time of death.

  • •Principles of autonomy that underlie respecting patient rights to refuse or direct withdrawal of life-prolonging interventions or to request pain medication even if it advances time of death support the choice for aid in dying. Aid in dying is increasingly accepted in law and medicine in the United States.

  • •Provision of aid in dying does not constitute assisting a suicide or euthanasia. Aid in dying is a practice with growing support in the public and medical and health policy communities3,10 and is likely to become more widely requested in the future.

  • •A clinician cannot be compelled to provide treatment that conflicts with his or her personal values. In these circumstances, the clinician cannot abandon the patient but should refer the patient to a colleague who is willing to provide the service.

Four prima facie principles have been used to characterize most ethical concerns in medicine: respect for patient autonomy, beneficence, nonmaleficence, and justice. Respect for patient autonomy refers to the duty to respect patients and their rights of self-determination; beneficence refers to the duty to promote patient interests; nonmaleficence refers to the duty to prevent harm to patients; and justice refers, in part, to the duty to treat patients and distribute health-care resources fairly.11 When applied to the care of an individual patient, however, these principles may conflict with one another. For example, a patient’s values, preferences, and goals may be at odds with a clinician’s perception of how best to help and not harm the patient. Clinical ethics identify, analyze, and provide guidance on how to resolve these conflicts.12

Informed consent derives from the ethical principle of respect for persons; autonomy is maximized when patients understand the nature of their condition and treatment options and participate in decisions about their care. Clinicians are ethically and legally obligated to ensure that patients are informed and allowed to participate in decision making regarding their treatment options.13

Elements of informed consent include information, patient voluntariness, and patient decision-making capacity. “Decision-making capacity” is a clinical term that refers to a patient’s ability to make informed health-care-related decisions. Clinicians determine decision-making capacity by whether a patient is able to (1) make and communicate choices, (2) understand relevant information, (3) appreciate the clinical situation and its consequences, (4) manipulate information rationally, and (5) make a decision that is consistent with the patient’s values and goals.14,15 Clinicians should not presume incapacity in patients who make decisions contrary to the clinicians’ recommendations.

In contrast, “competence” is a legal term and is determined by the courts.14,15 In most situations, it is acceptable to act on the physician’s determination of capacity without formal legal declaration of incompetence.14,15 Most patients who lose decision-making capacity because of illness are not declared incompetent by courts. With few exceptions (eg, emergencies), a clinician may not treat a patient until the clinician has given the patient (or his or her surrogate) information about the proposed treatment, alternatives, and risks and benefits of each. The patient (or surrogate) then has the right to agree, accept an alternative, or refuse treatment.16

A corollary to informed consent is informed refusal. A patient has the right to refuse any treatment. This is true even if the treatment would prolong life and death would predictably follow a decision to refuse or have direct withdrawal of treatment. A patient also has the right to direct the withdrawal of a previously consented treatment if the treatment no longer meets the patient’s health-care goals, if those goals have changed (eg, from prolonging life to minimizing discomforts), or if the perceived burdens of the ongoing treatment now outweigh the perceived benefits of that treatment (eg, quality of life)1719; honoring these decisions is an integral part of patient-centered care. If a clinician initiates or continues a treatment that a patient (or his or her surrogate) has refused, then ethically and legally, the clinician is committing battery, regardless of the clinician’s intent.16,20

It is well settled in the law that patients have the right to make decisions about medical treatments, grounded on both common law (derived from court decisions) respecting bodily integrity and self-determination and constitutional guarantees of privacy and liberty.21,22 Courts have consistently upheld a patient’s right to refuse treatment. In the landmark case involving Karen Quinlan, the Supreme Court of New Jersey ruled that the patient had both common law and constitutional rights to refuse continued ventilator support, even though it was likely that she would die without it.22 In the seminal case involving Nancy Cruzan, the US Supreme Court confirmed that patients have the right to refuse all life-sustaining treatments, including food and fluids.21 In the case of Terri Schiavo, the courts recognized, again, that adult patients have a constitutional right to refuse any treatment, including life-sustaining treatment, and that there is no legal difference between withdrawing treatment and not starting treatment in the first place.23

In a pair of well-known cases, Washington v Glucksberg and Vacco v Quill, the US Supreme Court recognized that dying patients have the right to as much pain medication as needed, even if it is likely to advance the time of death.24,25 In these cases, the court declined to recognize a federal constitutional right to choose aid in dying, carefully reserving the possibility it might do so in the future, and left the question of aid in dying to the states.2428 The regulation of the practice of medicine is primarily a matter of state law.2931

Principles that animate respecting the autonomy of patients so they are empowered to refuse or direct withdrawal of life-prolonging interventions, even if death is the anticipated result, also support respecting the wishes of dying patients who want to truncate their suffering and achieve a peaceful death through aid in dying. Support for aid in dying is growing, including among physicians (eg, a 2005 Finkelstein Institute national survey of physicians showed that 57% believe it ethical to provide aid in dying,32 and a 2011 poll of physicians in Vermont found that 59% support aid in dying as an end-of-life option33) and medical and health policy professional organizations. Many such organizations have adopted policies supportive of the practice, including the American Public Health Association, the AMWA, the American Medical Student Association, and the American College of Legal Medicine.3,10

The practice currently is regulated by statute in two states, Oregon and Washington,34,35 and is protected by a state supreme court decision in one state, Montana.36,37 Two states, Idaho and Arkansas, prohibit the practice.38,39 The status in other states is unclear; certainly, some empower their citizens with broad autonomy over medical and end-of-life decision-making, and absent a prohibition, the practice in these states can proceed subject to best practices and an emerging standard of care. An example of such a jurisdiction is Hawaii.40 It has been widely assumed that aid in dying might expose physicians to prosecution for assisting suicide under state criminal statutes; however, that assumption lacks foundation and is rebutted by the recognition that the choice of a dying patient for a peaceful death is starkly and fundamentally different from suicide.3,41,42 A careful consideration of the law of each state and the possible reach of such a statute in that state should govern practice in any individual state.

A tremendous amount is known about who chooses aid in dying, the reasons patients elect this option, whether it poses risks to patients, and how it affects end-of-life care because Oregon investigators have been collecting and publishing data for > 14 years about the practice in Oregon. The data have been closely examined and discussed in a plethora of publications.4348 Those examining Oregon’s experience have concluded that it is quite “apparent from credible sources in and out of Oregon that the Death With Dignity Act has not had an adverse impact on end-of-life care and in all probability has enhanced the other options.”49

The consensus emerging from the consideration of the evidence in Oregon is that the availability of aid in dying has not put patients at risk, has prompted improvements in end-of-life care for all patients, and has increased the options available to dying patients who are suffering.4349 This evidence supports the adoption of the policies by medical and health policy groups, as noted previously.3

Clinicians’ personal values and beliefs may lead them to prefer not to participate in aid in dying. In this situation, the clinician should inform the patient of his or her preference not to provide aid in dying as soon as the patient inquires, even in a general way. The clinician should not impose his or her values on the patient and should state his or her unwillingness to participate in a way to avoid causing the patient emotional distress.50,51 Further, the clinician must not abandon the patient but, rather, should refer the patient to a clinician who is willing to provide aid in dying.13,50 The willingness of the initial clinician to help to resolve the issue, even if he or she has moral objections to providing aid in dying, would absolve the clinician of any accusation of obstruction. If a clinician knows that he or she may have objection to aid in dying, he or she should address this in a timely fashion so that transfer to a new clinician can take place.

Communication about end-of-life options should be a part of a larger conversation about patients’ goals of care. The role of the clinician is to help patients to determine how the benefits and burdens of various options align with their desired outcomes for their health care.

  • •Communication about end-of-life options is an ongoing process that should begin soon after diagnosis of terminal illness and continue over time as the patient’s health status changes.

  • •Although the role of the clinician is to advise and assist the patient and family, the ultimate decision-making authority rests with the patient.

  • •Multiple options are available to patients approaching the end of life because of terminal illness, including forgoing or withdrawing life-prolonging treatment; voluntarily stopping intake of food and fluid; aggressive pain and symptom management; palliative sedation2628; and aid in dying.

Timely and effective communication among patients, families, and health-care providers is essential to ensure informed consent. Effective communication includes taking a proactive role in determining the patient’s goals of care, helping the patient weigh the benefits and burdens of various options as his or her clinical situation changes, and clarifying the consequences of each. These conversations improve outcomes for both patients and their families.52 They should begin at the time of terminal prognosis and should continue over the course of the patient’s illness as part of ongoing patient education. As illness progresses, the patient’s preference for outcomes and the level of burden acceptable to a patient may change.53,54 Few patients understand their end-of-life care options.55 Surveys demonstrate that although physicians believe that they should engage in these types of conversations with patients, they rarely do.56,57

Communication techniques used to discuss end-of-life options need to move from treatment-directed conversations to goal-directed conversations. These conversations should include a discussion of quality of life, functional status, what elements are important to the patient regarding control and dignity, and current and potential future symptoms because each element can influence how patients set goals for their health care, and all have been described by patients as priorities in end-of-life care.58

Palliative care aims to relieve suffering and improve quality of life for patients with advanced illness and their families.5961 In addition to symptom management, palliative care clinicians are experienced in the complex conversations surrounding progressive illness and changing goals of care.59 Studies show that patients who receive palliative care are more likely to have their treatment wishes followed and have better quality of life at the end of life.6265 Studies demonstrate that patients and families desire conversations about end-of-life care.65 Palliative care can transition smoothly to hospice care, which is available to patients with a prognosis of 6 months or less.60 Patients approaching death because of terminal illness and considering end-of-life options may benefit from having a palliative care specialist on their team of providers, especially if they are not in the care of an intensivist who is knowledgeable about palliative care.

In order for clinicians to provide their patients with the best care possible, they must keep current with evolving and emerging practices so that they may combine knowledge of such with their own clinical experience and the preferences of their patients.66 Clinical practice guidelines facilitate this. It is timely for clinical practice guidelines to be promulgated for aid in dying for two reasons: First, as noted previously, the practice is increasingly accepted by physicians and can be expected to be inquired about by a growing population of patients, and second, significant experience exists in providing this option. This experience can and should inform the development of guidelines that are useful to the provider community.6771

The Institute of Medicine recently formed the Committee on Standards for Developing Trustworthy Clinical Practice Guidelines. The task of the committee was to identify “the best methods used in developing clinical practice guidelines in order to ensure that organizations developing such guidelines have information on approaches that are objective, scientifically valid, and consistent.”72 The committee defined clinical practice guidelines as “statements that include recommendations intended to optimize patient care that are informed by a systematic review of evidence and an assessment of the benefits and harms of alternative care options.”72 Guidance recently published by the Heart Rhythm Society (HRS) regarding the deactivation of cardiovascular implantable electronic devices serves as a good example of such guidelines.9 Although most clinicians who care for patients with cardiovascular implantable electronic devices have participated in the deactivation of the devices, understanding of device deactivation among clinicians varies, and many feel uneasy about discussing device management as their patients approach the end of life.9 In response to such uncertainties, the HRS, with other professional organizations and experts in geriatrics, palliative care, psychiatry, pediatrics, nursing, law, ethics, and divinity, published guidance on deactivation.9 The HRS guidance is a valuable tool in ensuring appropriate response to a request for deactivation, improving patient care, and making it more likely that patients seeking deactivation will have their request honored.

Similar uncertainties and uneasiness exist among clinicians who treat terminally ill patients in general. For a number of reasons, clinicians avoid discussing end-of-life options with terminally ill patients. Some clinicians believe that discussing end-of-life options may extinguish a patient’s optimistic expectations73 or force patients to endure distress that may arise from a discussion of such a sensitive subject.74 Others may avoid such discussions because they view death as an enemy to be defeated74 or believe that their patients would not consider such options.75 However, these concerns should not prevent clinicians from discussing end-of life-options with their patients, including aid in dying, at least in jurisdictions where the practice has not been explicitly prohibited. As noted previously, only two states at present, Arkansas and Idaho, appear to have specific prohibitions directed at the practice. There is no evidence indicating that providing information about end-of-life care options results in loss of hope or harm to the patient.76,77 Clinicians are in a unique position to counsel patients knowledgeably about end-of-life options and the expected burdens and benefits of each.73 Studies also show that clinicians’ perceptions of their patients’ beliefs and how they affect their health-care decisions are inaccurate.78 Avoiding end-of-life discussions with patients deprives them of valuable information that is essential to preserving their autonomy and dignity and can result in patients receiving unwanted treatment. To improve clinicians’ ability to discuss end-of-life options, particularly aid in dying, it is timely for clinical practice guidelines to be promulgated.

To ensure that clinical practice guidelines are trustworthy, the committee suggests that they (1) be based on a systematic review of the existing evidence; (2) be developed by a multidisciplinary panel of experts who are knowledgeable about the subject matter as well as representatives from groups that will likely be affected; (3) consider important patient subgroups and patient preferences; (4) be based on an explicit and transparent process that minimizes distortions, biases, and conflicts of interest; (5) provide a clear explanation of the logical relationships between alternative care options and health outcomes and provide ratings of both the quality of evidence and the strength of the recommendations; and (6) be reconsidered and revised when important new evidence warrants modifications of recommendations.72

As discussed previously, 14 years of data regarding aid in dying are available from Oregon, demonstrating the benefits of the availability of this end-of-life option. Many patients have chosen aid in dying, and many physicians have provided it. Therefore, in jurisdictions that do not prohibit aid in dying, clinical practice guidelines should be developed and adopted for this practice. A recent survey of physicians in Hawaii indicated that 83% of those responding to the survey believe that the medical community, not the government, should establish practice guidelines governing aid in dying.79 Guidelines will assist clinicians in responding to requests for aid in dying, providing assurance that their practice is consistent with best practices, and will improve patient access to this end-of-life option.

Aid in dying is an end-of-life option with growing support, including among medical and health policy professionals and their organizations. It is a compassionate option that does not put patients or vulnerable populations at risk. It is likely to be considered by an increasing population of patients. In jurisdictions where aid in dying is permitted by statute or court decision or is subject to best practices in jurisdictions that empower patients with autonomy over medical and end-of-life decision making and have no explicit prohibition, clinicians can provide aid in dying to patients who request it. It is timely for clinical practice guidelines on aid in dying to be promulgated in order to offer guidance to clinicians who receive requests for and are willing to provide this option to their patients.

Financial/nonfinancial disclosures: The author has reported to CHEST that no potential conflicts of interest exist with any companies/organizations whose products or services may be discussed in this article.

Other contributions: I thank Jacquelyn Baylon, Loyola Law School, Los Angeles, Juris Doctor candidate, May 2012, for her able assistance with this article.

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Wright AA, Ray A, Zhang B, et al. Medical care and emotional distress associated with advanced cancer patients’ end-of-life discussions with their physicians [Abstract]. J Clin Oncol. 2008;26(suppl):6505.
 
Turner T, Misso M, Harris C, Green S. Development of evidence-based clinical practice guidelines (CPGs): comparing approaches. Implement Sci. 2008. 3:45.
 
Washington State Psychological AssociationWashington State Psychological Association The Washington death with dignity act: WSPA guidelines for mental health professionals The Washington death with dignity act: WSPA guidelines for mental health professionals. Washington State Psychological Association website.http://www.wapsych.org/associations/2046/files/DWD%20Guidelines%206-3-09.pdf. Accessed May 22, 2012.
 
The Task Force to Improve Care of Terminally-Ill OregoniansThe Task Force to Improve Care of Terminally-Ill Oregonians. The Oregon death with dignity act: a guidebook for health care professionals. Oregon Health & Science University website.http://www.ohsu.edu/xd/education/continuing-education/center-for-ethics/ethics-outreach/upload/Oregon-Death-with-Dignity-Act-Guidebook.pdf. 2008. Accessed May 22, 2012.
 
Werth JL, Benjamin GA, Farrenkopf T. Requests for physician-assisted death: guidelines for assessing mental capacity and impaired judgment. Psychol Public Policy Law. 2000;6(2):348-372.
 
Jamison S. Factors to consider before participating in a hastened death: issues for medical professionals. Psychol Public Policy Law. 2000;6(2):416-433.
 
Farrenkopf T, Bryan J. Psychological consultation under Oregon’s 1994 Death With Dignity Act: ethics and procedures. Prof Psychol Res Pr. 1999;30(3):245-249.
 
Committee on Standards for Developing Trustworthy Clinical Practice GuidelinesCommittee on Standards for Developing Trustworthy Clinical Practice Guidelines Board on Health Care Services Board on Health Care ServicesGraham R, Mancher M, Wolman DM, Greenfield S, Steinberg E. Clinical Practice Guidelines We Can Trust. Washington DC: National Academies Press; 2011.
 
Gawande A. Letting go.The New Yorkerwebsite.http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande. Accessed May 22, 2012.
 
Morrison MFSteinberg MD, Youngner SJ. Obstacles in doctor-patient communication at end of life. End-of-Life Decisions: A Psychosocial Perspective. Washington, DC: American Psychiatric Press; 2005:109-136.
 
Desharnias S, Carter RE, Hennessy W, Kurent JE, Carter C. Lack of concordance between physician and patient: reports of end-of-life care discussions. J Palliat Med. 2007;10(3):728-740.
 
Harrington SE, Smith TJ. The role of chemotherapy at the end of life: “when is enough, enough?”. JAMA. 2008;299(22):2667-2678.
 
Tucker KL. The campaign to deny terminally ill patients information and choices at the end of life. J Leg Med. 2009;30(4):495-514.
 
Street RL Jr, Haidet P. How well do doctors know their patients? Factors affecting physician understanding of patients’ health beliefs. J Gen Intern Med. 2011;26(1):21-27.
 
Qmark Research. Hawaii physicians attitudes toward aid in dyingQmark Research. Hawaii physicians attitudes toward aid in dying. Compassion & Choices website.http://compassionandchoices.org/document.doc?id=1122. January 2012. Accessed May 22, 2012.
 

Figures

Tables

References

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Battin MP, van der Heide A, Ganzini L, van der Wal G, Onwuteaka-Philipsen BD. Legal physician-assisted dying in Oregon and The Netherlands: evidence concerning the impact on patients in “vulnerable” groups. J Med Ethics. 2007;33(10):591-597.
 
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Wright AA, Ray A, Zhang B, et al. Medical care and emotional distress associated with advanced cancer patients’ end-of-life discussions with their physicians [Abstract]. J Clin Oncol. 2008;26(suppl):6505.
 
Turner T, Misso M, Harris C, Green S. Development of evidence-based clinical practice guidelines (CPGs): comparing approaches. Implement Sci. 2008. 3:45.
 
Washington State Psychological AssociationWashington State Psychological Association The Washington death with dignity act: WSPA guidelines for mental health professionals The Washington death with dignity act: WSPA guidelines for mental health professionals. Washington State Psychological Association website.http://www.wapsych.org/associations/2046/files/DWD%20Guidelines%206-3-09.pdf. Accessed May 22, 2012.
 
The Task Force to Improve Care of Terminally-Ill OregoniansThe Task Force to Improve Care of Terminally-Ill Oregonians. The Oregon death with dignity act: a guidebook for health care professionals. Oregon Health & Science University website.http://www.ohsu.edu/xd/education/continuing-education/center-for-ethics/ethics-outreach/upload/Oregon-Death-with-Dignity-Act-Guidebook.pdf. 2008. Accessed May 22, 2012.
 
Werth JL, Benjamin GA, Farrenkopf T. Requests for physician-assisted death: guidelines for assessing mental capacity and impaired judgment. Psychol Public Policy Law. 2000;6(2):348-372.
 
Jamison S. Factors to consider before participating in a hastened death: issues for medical professionals. Psychol Public Policy Law. 2000;6(2):416-433.
 
Farrenkopf T, Bryan J. Psychological consultation under Oregon’s 1994 Death With Dignity Act: ethics and procedures. Prof Psychol Res Pr. 1999;30(3):245-249.
 
Committee on Standards for Developing Trustworthy Clinical Practice GuidelinesCommittee on Standards for Developing Trustworthy Clinical Practice Guidelines Board on Health Care Services Board on Health Care ServicesGraham R, Mancher M, Wolman DM, Greenfield S, Steinberg E. Clinical Practice Guidelines We Can Trust. Washington DC: National Academies Press; 2011.
 
Gawande A. Letting go.The New Yorkerwebsite.http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande. Accessed May 22, 2012.
 
Morrison MFSteinberg MD, Youngner SJ. Obstacles in doctor-patient communication at end of life. End-of-Life Decisions: A Psychosocial Perspective. Washington, DC: American Psychiatric Press; 2005:109-136.
 
Desharnias S, Carter RE, Hennessy W, Kurent JE, Carter C. Lack of concordance between physician and patient: reports of end-of-life care discussions. J Palliat Med. 2007;10(3):728-740.
 
Harrington SE, Smith TJ. The role of chemotherapy at the end of life: “when is enough, enough?”. JAMA. 2008;299(22):2667-2678.
 
Tucker KL. The campaign to deny terminally ill patients information and choices at the end of life. J Leg Med. 2009;30(4):495-514.
 
Street RL Jr, Haidet P. How well do doctors know their patients? Factors affecting physician understanding of patients’ health beliefs. J Gen Intern Med. 2011;26(1):21-27.
 
Qmark Research. Hawaii physicians attitudes toward aid in dyingQmark Research. Hawaii physicians attitudes toward aid in dying. Compassion & Choices website.http://compassionandchoices.org/document.doc?id=1122. January 2012. Accessed May 22, 2012.
 
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