This interactive California Physician Ebook contains 12 hours of continuing education. To complete click the Complete Your CE button at the top right of the screen.
California Continuing Medical Education
2024 California Medical Licensure Program
*SATISFIES TWELVE (12) CREDIT CME REQUIREMENT IN PAIN MANAGEMENT AND THE TREATMENT OF TERMINALLY ILL AND DYING PATIENTS. 12 HOURS Pain Management and Appropriate Treatment of the Terminally Ill*
Need to complete the DEA’s new one-time MATE requirement? See page i for more details.
CME FOR:
AMA PRA CATEGORY 1 CREDITS ™ MIPS MOC STATE LICENSURE
CA.CME.EDU
InforMed is Accredited by the Accreditation Council for Continuing Medical Education (ACCME) to provide continuing medical education for physicians.
2024 CALIFORNIA
01 UNDERSTANDING AND COMPASSION: PAIN, ADDICTION AND END-OF-LIFE CARE 12 CREDITS*
*Satisfies twelve (12) credit CME requirement in pain management and the treatment of terminally ill and dying patients.
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LEARNER RECORDS: ANSWER SHEET & EVALUATION REQUIRED TO RECEIVE CREDIT
CME that counts for MOC Participants can earn MOC points equivalent to the amount of CME credits claimed for designated activities (see page iii for further details). InforMed currently reports to the following specialty boards: the American Board of Internal Medicine (ABIM), the American Board of Anesthesiology (ABA), the American Board of Pediatrics (ABP), the American Board of Otolaryngology–Head and Neck Surgery (ABOHNS), and the American Board of Pathology (ABPath). To be awarded MOC points, you must obtain a passing score, complete the corresponding activity evaluation, and provide required information necessary for reporting.
$135.00
PROGRAM PRICE (12 CREDITS)
DATA REPORTING: Federal, State, and Regulatory Agencies require disclosure of data reporting to all course participants. InforMed abides by each entity’s requirements for data reporting to attest compliance on your behalf. Reported data is governed by each entity’s confidentiality policy. To report compliance on your behalf, it’s mandatory that you must achieve a passing score and accurately fill out the learner information, activity and program evaluation, and the 90-day follow up survey. Failure to accurately provide this information may result in your data being non-reportable and subject to actions by these entities.
InforMed has joined the Elite Learning family Two of the nation’s top healthcare education providers have joined forces with one goal in mind: to offer physicians a state-of-the-art learning experience that fulfills your state requirements and empowers you with the knowledge you need to provide the best patient care. Here’s what you can expect from our new partnership: • COURSES: In addition to the mandatory courses you need to renew your state license, you’ll now have access to dozens of hours of elective courses and an expanded content library. • ACCOUNTS: You’ll also have access to a personalized learner account. In your account you can add, organize, and track your ongoing and completed courses. For instructions on how to set up your account, email us at office@elitelearning.com. • BOOK CODES: You may notice a book code on the back cover of the latest InforMed program you’ve received in the mail. When entered on our new site, this code will take you directly to the corresponding self-assessment. See more information below. InforMed has the solution. Scan the QR code or go to https://uqr.to/deamate to get started. Effective June 27, 2023 , renewing DEA-registered practitioners must complete 8 hours of one-time training on the treatment and management of patients with opioid or substance use disorders. Get the training you need in a self-paced, convenient format with a course specifically designed for physicians to meet the Drug Enforcement Administration (DEA)’s new requirement under the Medication Access and Training Expansion (MATE) Act. Need to complete the DEA’s new requirement under the Medication Access and Training Expansion (MATE) Act?
How to complete
Please read these instructions before proceeding. Read and study the enclosed courses and answer the self-assessment questions. To receive credit for your courses, you must provide your customer information and complete the mandatory evaluation. We offer three ways for you to complete. Choose an option below to receive credit and your certificate of completion. Scan this QR code to complete your CE now !
• Go to BOOK.CME.EDU . Locate the book code CA23CME found on the back of your book and enter it in the box then click GO . • If you already have an account created, sign in to your account with your username and password. If you do not have an account already created, you will need to create one now. • Follow the online instructions to complete your self-assessment. Complete the purchase process to receive course credit and your certificate of completion. Please remember to complete the online evaluation. • To find elective hours, please visit CA.CME.EDU ONLINE FASTEST AND EASIEST!
Enter book code
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CA23CME
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BY MAIL
• Fill out the answer sheet and evaluation found in the back of this booklet. Please include a check or credit card information and e-mail address. Mail to InforMed, PO Box 2595, Ormond Beach, FL 32175-2595 . • Completions will be processed within 2 business days from the date it is received and certificates will be e-mailed to the address provided.
• Submissions without a valid e-mail will be mailed to the address provided.
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BOOK CODE: CA23CME
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INFORMED TRACKS WHAT YOU NEED, WHEN YOU NEED IT
California Professional License Requirements
PAIN MANAGEMENT/TERMINALLY ILL PATIENTS The Medical Board of California requires all physicians (excluding pathologists and radiologists) to earn twelve (12) credits of continuing education in pain management and the treatment of terminally ill and dying patients (business and professions code §2190.5). Physicians must complete this one-time requirement by the second renewal of their medical license or four (4) years from the date of their initial license, whichever occurs first. When earned, these credits count toward the total hours required during that biennium. OTHER PHYSICIAN CME REQUIREMENTS The Medical Board of California requires 50 AMA PRA Category 1 Credits TM of continuing medical education credits each biennium as a prerequisite for physicians to renew their medical license. Also, under California’s law, the Medical Board requires that all general internal medicine and family practice physicians, that have a patient population of which 25 percent are age 65 years or older, complete at least 20 percent of their 50 credits each biennium in the field of geriatric medicine. PHYSICIANS MANDATORY CONTINUING MEDICAL EDUCATION REQUIREMENT FOR LICENSE RENEWAL DEA ONE-TIME MATE REQUIREMENT (NEW) Effective June 27, 2023 , renewing DEA-registered practitioners must complete eight (8) hours of one-time training on the treatment and management of patients with opioid or substance use disorders.
LICENSE RENEWAL INFORMATION 50 AMA PRA CATEGORY 1 CREDITS TM including 12 CREDITS in Pain Management/Terminally Ill*
We are a nationally accredited CME provider. For all board-related inquiries please contact:
Medical Board of California 2005 Evergreen Street, Suite 1200 Sacramento, CA 95815 Email: webmaster@mbc.ca.gov P: 1-800-633-2322
*One-time mandatory CME requirement
Disclaimer: The above information is provided by InforMed and is intended to summarize state CE/CME license requirements for informational purposes only. This is not intended as a comprehensive statement of the law on this topic, nor to be relied upon as authoritative. All information should be verified independently.
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MOC/MIPS CREDIT INFORMATION
In addition to awarding AMA PRA Category 1 Credits TM , the successful completion of enclosed activities may award the following MOC points and credit types. To be awarded MOC points, you must obtain a passing score and complete the corresponding activity evaluation.
Table 1. MOC Recognition Statements Successful completion of certain enclosed CME activities, which includes participation in the evaluation component, enables the participant to earn up to the amounts and credit types shown in Table 2 below. It is the CME activity provider’s responsibility to submit participant completion information to ACCME for the purpose of granting MOC credit. Board Programs ABA American Board of Anesthesiology’s redesigned Maintenance of Certification in Anesthesiology TM (MOCA®) program, known as MOCA 2.0®
ABIM
American Board of Internal Medicine’s Maintenance of Certification (MOC) program
American Board of Otolaryngology – Head and Neck Surgery’s Continuing Certification program (formerly known as MOC)
ABOHNS
ABPath
American Board of Pathology’s Continuing Certification Program
ABP
American Board of Pediatrics’ Maintenance of Certification (MOC) program
Table 2. Credits and Type Awarded
AMA PRA Category 1 Credits TM
Activity Title
ABA ABIM ABO ABOHNS ABPath ABP
Understanding and Compassion: Pain, Addiction and End-of-Life Care 12 Credits LL+SA Legend: LL = Lifelong Learning, MK = Medical Knowledge, SA = Self-Assessment, LL+SA = Lifelong Learning & Self-Assessment, PS = Patient Safety 12 AMA PRA Category 1 Credits T M 12 Credits LL 12 Credits MK 12 Credits LL & SA 12 Credits SA 12 Credits LL
Table 3. CME for MIPS Statement Completion of each accredited CME activity meets the expectations of an Accredited Safety or Quality Improvement Program (IA PSPA_28) for the Merit-based Incentive Payment Program (MIPS). Participation in this Clinical Practice Improvement Activity (CPIA) is optional for eligible providers.
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UNDERSTANDING AND COMPASSION: PAIN, ADDICTION AND END-OF-LIFE CARE
COURSE DATES: MAXIMUM CREDITS:
FORMAT:
Release Date: 1/2023 Exp. Date: 12/2025
12 AMA PRA Category 1 Credits ™
Enduring Material (Self Study)
TARGET AUDIENCE This course is designed for all physicians (MD/DO), physician assistants, nurse practitioners and other healthcare professionals who seek to improve palliative care, pain management, and addiction for their patients. COURSE OBJECTIVE Physicians and other healthcare professionals are constantly striving to improve care for patients. Certain disease states can present challenging circumstances for the physician to manage: addiction, effective management of painful conditions, and care at the end of life care. This educational activity addresses each of these complicated concerns and examines many tools available to physicians to compassionately and appropriately care for patients experiencing these afflictions.
HOW TO RECEIVE CREDIT:
• Read the course materials.
•
Co mplete the self-assessment questions at the end. A score of 70% is required.
• R eturn your customer information/ answer sheet, evaluation, and payment to InforMed by mail or complete online at BOOK.CME.EDU .
LEARNING OBJECTIVES
Completion of this course will better enable the course participant to: 1. Explain general trends in the preferences that patients typically have for care at the end of life. 2. Discuss the appropriate role of physicians in managing patients in hospice programs. 3. Describe the advantages and the disadvantages of opioid pain medications in the context of end-of-life pain management. 4. Describe evaluation tools and treatment options for patients in pain. 5. Summarize non-pharmacological treatment modalities for pain. 6. Explain the use of non-opioid treatments for patients in pain. 7. Discuss the use of opioids for the treatment of pain. 8. Describe pain management considerations for terminally ill patients. 9. Summarize the causes of addiction and diagnosis of substance use disorders. 10. Discuss the treatment of opioid use disorder, including medically supervised withdrawal, medication-assisted treatment, and overdose management. 11. Review the risk factors, assessment, and treatment of benzodiazepine use disorder. 12. Explain the effects of alcohol on the body as well as screening for and treatment of alcohol withdrawal and alcohol use disorder. ACCREDITATION STATEMENT InforMed is accredited by the Accreditation Council for Continuing Medical Education (ACCME) to provide continuing medical education for physicians. IMPLICIT BIAS IN HEALTHCARE Implicit bias significantly affects how healthcare professionals perceive and make treatment decisions, ultimately resulting in disparities in health outcomes. These biases, often unconscious and unintentional, can shape behavior and produce differences in medical care along various lines, including race, ethnicity, gender identity, sexual orientation, age, and socioeconomic status. Healthcare disparities stemming from implicit bias can manifest in several ways. For example, a healthcare provider might unconsciously give less attention to a patient or make assumptions about their medical needs based on race, gender, or age. The unconscious assumptions can lead to delayed or inadequate care, misdiagnoses, or inappropriate treatments, all of which can adversely impact health outcomes. Addressing implicit bias in healthcare is crucial for achieving equity in medical treatment. Strategies to combat these biases involve education and awareness programs for healthcare professionals. These programs help individuals recognize and acknowledge their biases, fostering a more empathetic and unbiased approach to patient care. Additionally, implementing policies and procedures prioritizing equitable treatment for all patients can play a pivotal role in reducing healthcare disparities. Ultimately, confronting implicit bias in healthcare is essential to creating a more just and equitable healthcare system where everyone receives fair and equal treatment regardless of their background or characteristics.
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DESIGNATION STATEMENT InforMed designates this enduring material for a maximum of 12 AMA PRA Category 1 Credits ™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.
COURSE SATISFIES
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FACULTY Brad Bendesky, MD Clinical Associate Professor of Emergency Medicine Drexel University of Medicine Sarab Sodhi, MD, MAUB Assistant Professor Cooper Medical School of Rowan University Katie Blair, PharmD, RPh Medical Writer
Pain Management and Terminally Ill Patients
SPECIAL DESIGNATION
This course satisfies twelve (12) CME credit hours on pain management and the appropriate treatment of the terminally ill. The Medical Board of California requires most physicians and surgeons to complete a one-time mandatory 12 hours of CME in the subjects of pain management and the treatment of terminally ill and dying patients.
ACTIVITY PLANNER Michael Brooks CME Director InforMed
DISCLOSURE OF INTEREST In accordance with the ACCME Standards for Integrity and Independence in Accredited Continuing Education, InforMed implemented mechanisms, prior to the planning and implementation of this CME activity, to identify and resolve conflicts of interest for all individuals in a position to control content of this CME activity.
FACULTY/PLANNING COMMITTEE DISCLOSURE The following faculty and/or planning committee members have indicated they have no relevant financial relationship(s) to disclose with ineligible companies whose primary business is producing, marketing, selling, re-selling, or distributing healthcare products used by or on patients: • Brad Bendesky, MD
• Sarab Sodhi, MD, MAUB • Katie Blair, PharmD, RPh • Michael Brooks
STAFF AND CONTENT REVIEWERS InforMed staff, input committee and all content validation reviewers involved with this activity have reported no relevant financial relationships with ineligible companies whose primary business is producing, marketing, selling, re-selling, or distributing healthcare products used by or on patients.
DISCLAIMER *2024. All rights reserved. These materials, except those in the public domain, may not be reproduced without permission from InforMed. This publication is designed to provide general information prepared by professionals in regard to the subject matter covered. It is provided with the understanding that InforMed, Inc is not engaged in rendering legal, medical or other professional services. Although prepared by professionals, this publication should not be utilized as a substitute for professional services in specific situations. If legal advice, medical advice or other expert assistance is required, the service of a professional should be sought.
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to construct effective strategies for care, and to communicate sensitively with patients and those close to them. This CME learning activity summarizes the major dimensions of end-of-life (EOL) care that clinicians are likely to encounter as they care for, and comfort, patients in their final phase of life. Patient preferences for EOL care Predicting what treatments patients will want at the end of life is complicated by factors such as the patient’s age, the nature of the illness, the ability of medicine to sustain life, and the emotions families endure when a loved one is sick or dying. When seriously ill patients are nearing the end of life, they and their families sometimes find it difficult to decide whether to continue medical treatment and, if so, how much treatment and for how long. In these instances, patients rely on their physicians or other trusted health professionals for guidance. In the best circumstances, the patient, the family, and the physician have discussed treatment options, including the length and invasiveness of treatment, chances of success, overall prognosis, and the patient’s quality of life during and after the treatment. Ideally, these conversations would continue as the patient’s condition changes. Frequently, however, such discussions are not held. If the patient becomes incapacitated due to illness, the patient’s family and physician must make decisions based on what they think the patient would want. While no one can predict exactly what patients will want or need when they are sick or dying, current research can help providers offer end- of-life care based on preferences (both real and hypothetical) held by the majority of patients under similar circumstances. 3 Research indicates that most patients have not participated in advance care planning, yet many are willing to discuss end-of-life care. One way to determine patients’ preferences for end-of-life care is to discuss hypothetical situations and find out their opinions on certain treatment patterns. These opinions can help clarify and predict the preferences they would be likely to have it if they should become incapacitated and unable to make their own decisions. The Patient Self-Determination Act guarantees patients the right to accept or refuse treatment and to complete advance medical directives. 4 However, despite patients’ rights to determine their future care, research reveals that: 3,5 • Only one in three American adults have created an advance directive expressing their wishes for end-of-life care. • 28% of home healthcare patients, 65% of nursing home residents, and 88% of hospice care patients have created advance directives. • Only 12 percent of patients with an advance directive received input from their physician in its development. • As many as three-quarters of physicians whose patients had an advance directive were not aware that it existed.
• Having an advance directive did not increase documentation in the medical chart regarding patient preferences. • Advance directives helped make end-of-life decisions in less than half of the cases where a directive existed. • Advance directives usually were not applicable until the patient became incapacitated and “absolutely, hopelessly ill.” • Providers and patient surrogates had difficulty knowing when to stop treatment and often waited until the patient was actively dying before the advance directive was invoked. • Language in advance directives was usually too vague and general to provide clear instruction. • Surrogates named in the advance directive often were not present to make decisions or were too emotionally distraught to offer guidance. • Physicians were only about 65 percent accurate in predicting patient preferences and tended to make errors of under-treatment, even after reviewing the patient’s advance directive. • Surrogates who were family members tended to make prediction errors of overtreatment, even if they had reviewed or discussed the advance directive with the patient or assisted in its development. Research also shows that care at the end of life is sometimes inconsistent with the patients’ preferences to forgo life-sustaining treatment, and that patients may receive care they do not want. For example, one study found that patient preferences to decline cardiopulmonary resuscitation (CPR) were not translated into do-not-resuscitate (DNR) orders. 6 Another study found that patients received life-sustaining treatment at the same rate regardless of their desire to limit treatment. 7 Because physicians are in the best position to know when to bring up the subject of end-of-life care, they are the ones who need to initiate and guide advance care planning discussions. Such discussions are usually reserved for people who are terminally ill or whose death is imminent, yet research indicates that people suffering from chronic illness also need advance care planning. Most people who die in the United States (80 to 85 percent) are Medicare beneficiaries age 65 and over, and most die from chronic conditions such as heart disease, cancer, chronic lower respiratory diseases, stroke, diabetes, Alzheimer’s disease, and renal failure. 8 Only about 22 percent of deaths in people age 65+ are from cancer, which generally follows an expected course, or “trajectory,” leading to death. 8 Many maintain their activities of daily living until about 2 months prior to death, after which most functional disability occurs. In contrast, people with chronic diseases such as heart disease or COPD go through periods of slowly declining health marked by sudden severe episodes of illness requiring hospitalization, from which the patient recovers.
Introduction to Palliative/End-of-Life Care In the United States, dying at home in the care of family—the norm for centuries—has been largely replaced by death in hospitals, nursing homes, and other institutions, often with highly technological care delivered by specialist health providers. Although not without benefits, this process of dying can result in isolation of the patient from their loved ones, as well as isolation from familiar and comforting surroundings. Because Americans, on average, live much longer now than they did in the past, a much larger proportion of the population dies at an advanced age. More than 70 percent of those who die each year are age 65 or over, and those who die in old age tend to die of different causes than those who die young. 1 The dying process today tends to be more extended, in part because medical treatments can manage pneumonia, infections, kidney failure, and other immediate causes of death that come in the wake of cancer or chronic disease. The field of palliative care is one response to the changing profile of death in the 21 st century. It focuses on the prevention and relief of suffering by carefully managing symptoms and by paying close attention to the emotional, spiritual, and practical needs of patients and those close to them. Other community and professional responses include the development of hospice programs, bereavement support groups, and policies and programs that encourage communication about people’s goals and preferences as they approach death. Palliative care is both a general approach to patient care (integrated with disease-modifying therapies) as well as a growing practice specialty. Primary care physicians are often expected to provide basic elements of palliative care (e.g., pain and symptom assessment and management, advance care planning), but complex cases may be best handled by palliative care specialists. Decisions about the use of life-sustaining treatment when a person is seriously ill or near death have profound consequences for that person, for his or her family and loved ones, and, often, for health care providers. Such decisions may determine the time and circumstances of the person’s death and may shape the person’s experience of remaining life—where it is lived, with whom, and with what degree of comfort or suffering. Physicians thus have a compelling responsibility to be as compassionate and competent in their care of dying patients as with patients at any other phase of their lives. Unfortunately, the education and training of physicians and other health care professionals often fail to provide them the attitudes, knowledge, and skills required to care well for the dying patient. 2 Many deficiencies in practice stem from fundamental insufficiencies in professional education. Undergraduate, graduate, and continuing education programs often do not sufficiently prepare health professionals to recognize the final phases of illnesses, to understand and manage their own emotional reactions to death and dying,
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This pattern may repeat itself, with the patient’s overall health steadily declining, until the patient dies. For these individuals there is considerable uncertainty about when death is likely to occur. Patients who suffer from chronic conditions such as stroke, dementia, or the frailty of old age go through a third trajectory of dying, marked by a steady decline in mental and physical ability that finally results in death. Patients are not often told that their chronic disease is terminal, and estimating a time of death for people suffering from chronic conditions is much more difficult than it is for those dying of cancer. When patients are hospitalized for health crises resulting from their chronic incurable disease, medical treatment cannot cure the underlying illness, but it is still effective in resolving the immediate emergency and thus possibly extending the patient’s life. At any one of these crises the patient may be close to death, yet there often is no clearly recognizable threshold between being very ill and actually dying. Patients value advance care planning discussion According to patients who are dying and their families who survive them, lack of communication with physicians and other health care providers causes confusion about medical treatments, conditions and prognoses, and the choices that patients and their families need to make. 2 One study indicated that about one-third of patients would discuss advance care planning if the physician brought up the subject and about one-fourth of patients had been under the impression that advance care planning was only for people who were very ill or very old. 9 Only 5 percent of patients in this study stated that they found discussions about advance care planning too difficult. Other studies have shown that discussing advance care planning and directives with their doctor increased patient satisfaction among patients age 65 years and over. 10 Patients who talked with their families or physicians about their preferences for end-of- life care had less fear and anxiety, felt they had more ability to influence and direct their medical care, believed that their physicians had a better understanding of their wishes, and indicated a greater understanding and comfort level than they had before the discussion. Compared to surrogates of patients who did not have an advance directive, surrogates of patients with an advance directive who had discussed its content with the patient reported greater understanding, better confidence in their ability to predict the patient’s preferences, and a stronger belief in the importance of having an advance directive. Finally, patients who had advance planning discussions with their physicians continued to discuss and talk about these concerns with their families. Such discussions enabled patients and families to reconcile their differences about end- of-life care and could help the family and physician come to agreement if they should need to make decisions for the patient.
Opportunities for advance planning discussions Research indicates that physicians can conduct advance care planning discussions with many patients during routine outpatient office visits. Hospitalization for a serious and progressive illness offers another opportunity. The Patient Self-Determination Act requires facilities such as hospitals that accept Medicare and Medicaid money to provide written information to all patients concerning their rights to refuse or accept treatment and to complete advance directives. Patients often send cues to their physicians that they are ready to discuss end-of-life care by talking about wanting to die or asking about hospice. Certain situations, such as approaching death or discussions about prognoses or treatment options that have poor outcomes, also lend themselves to advance care planning discussions. Predicting when patients are near death is difficult, but providers can ask themselves the question: are the patients “sick enough today that it would not be surprising to find that they had died within the next year (or few months, or 6 months)”? A five-part process has been suggested to guide structured discussions about end-of-life care: 2 1. Initiate a guided discussion. During this discussion, the physicians should share their medical knowledge of hypothetical scenarios and treatments applicable to a patient’s particular situation and find out the patient’s preferences for providing or withholding treatments under certain situations. The hypothetical scenarios should cover a range of possible prognoses and any disability that could result from treatment. By presenting various hypothetical scenarios and probable treatments and noting when the patient’s preferences change from “treat” to “do not treat,” the physician can begin to identify the patient’s personal preferences and values. The physician can also determine if the patient has an adequate understanding of the scenario, the treatment, and possible outcomes. One study indicated that elderly patients have enough knowledge about advance directives, CPR, and artificial nutrition/hydration on which to base decisions for treatment at the end of life, but they do not always understand their realistic chances for a positive outcome. 11 Other research indicates that patients significantly overestimate their probability of survival after receiving CPR and have little or no understanding of mechanical ventilation. 12 After patients were told their probability of survival, over half changed their treatment preference from wanting CPR to refusing CPR. Patients also may not know of the risks associated with the use of mechanical ventilation, such as neurological impairment or cardiac arrest.
2. Introduce the subject of advance care planning and offer information. Patients should be encouraged to complete both an advance directive and durable power of attorney. The patient should understand that when no advance directive or durable power of attorney exists, patients essentially leave treatment decisions to their physicians and family members. Physicians can provide this information themselves; refer the patient to other educational sources, including brochures or videos; or recommend that the patient talk with clergy or a social worker to answer questions or address concerns. 3. Prepare and complete advance care planning documents. Advance care planning documents should contain specific instructions. The standard language contained in advance directives often is not specific enough to be effective in directing care. Many times, instructions do not state the cutoff point of the patient’s illness that should be used to discontinue treatment and allow the person to die. Terms such as “no advanced life support” are too vague to guide specific treatments. If a patient does not want to be on a ventilator, the physician should ask the patient if this is true under all circumstances or only specific circumstances. 4. Review the patient’s preferences on a regular basis and update documentation. Patients should be reminded that advance directives can be revised at any time. Although studies show that patient preferences are stable over time when considering hypothetical situations, patients often change their minds when confronted with an actual situation or as their health status changes. 13 Some patients who stated that they would rather die than endure a certain condition did not choose death once that condition occurred. Other research shows that patients who had an advance directive maintained stable treatment preferences 86 percent of the time over a 2-year period, while patients who did not have an advance directive changed their preferences 59 percent of the time. 14 Both patients with and without a living will were more likely to change their preferences and desire increased treatment once they became hospitalized, suffered an accident, became depressed, or lost functional ability or social activity. Another study linked changes in depression to changes in preferences for CPR. 15 Increased depression was associated with patients’ changing their initial preference for CPR to refusal of CPR, while less depression was associated with patients’ changing their preference from refusal of CPR to acceptance of CPR. It is difficult for people to fully imagine what a prospective health state might be like. Once they experience that health state, they may find it more or less tolerable than they imagined.
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During reviews of advance directives, physicians should note which preferences stay the same and which change. Preferences that change indicate that the physician needs to investigate the basis for the change. 5. Apply the patient’s desires to actual circumstances. Conflicts sometimes arise during discussions about end-of-life decision-making. If patients desire non- beneficial treatments or refused beneficial treatments, most physicians state that they would negotiate with them and try to educate and convince them to either forgo a non- beneficial treatment or to accept a beneficial treatment. 16 If the treatment was not harmful, expensive, or complicated, about one-third of physicians would allow the patient to receive a non-beneficial treatment. Physicians stated that they would also enlist the family’s help or seek a second opinion from another physician. Many patients do not lose their decision making capacity at the end of life. Physicians and family members can continue discussing treatment preferences with these patients as their condition changes. However, physicians and families may encounter the difficulty of knowing when an advance directive should become applicable for patients who are extremely sick and have lost their decision making capacity but are not necessarily dying. There is no easy answer to this dilemma. Even if patients require a decision for a situation that was not anticipated and addressed in their advance directive, physicians and surrogates still can make an educated determination based on the knowledge they have about the patients’ values, goals, and thresholds for treatment. Legalities of the Advance Directive & POLST: An advance directive in general is not a legally binding document. While a succinct advance directive can be a description of a patient’s wishes, the patient’s family is not legally bound to follow it in case of the patient’s incapacitation. A Physicians Orders for Life Sustaining Treatment (POLST) which has various names in various states, is in general designed as a legally binding series of medical orders that the patients primary healthcare provider puts in writing after discussion with the patient. This allows for the patient’s wishes to be more easily accepted by putting the wishes into a simple to read, standardized for the state form, that carries the weight of physician orders. Each state’s rules vary, however generally speaking the POLST can be amended by the signatory or other legally authorized individuals. If planning for a patient’s end of life wishes a POLST or similar document is likely a better choice than a typical advance directive. While data about the POLST is generally limited, and focused mostly on Oregon, it is suggested from the current data that there is likely benefit to using a structured form like the POLST. 109
The importance of shared decision making Effective patient-provider communication and shared decision making is achieved in part through active listening, facilitation, and empathetic comments . 17 These skills lead to an engaged, dynamic relationship between patients, their families, and health care providers. This partnership should be grounded in mutuality, which includes the sharing of information, creation of consensus, and other components of the shared decision making paradigm. 18 Reflective listening An effective communication strategy in any patient-physician relationship is reflective listening . This means listening carefully and non-judgmentally to what your patient is saying, then reflecting it back in a slightly modified or re-framed manner. 19 This lets the clinician confirm the accuracy of their understanding of the patient and gives the patient both the indication that they are being heard (an all- too-rare experience for many patients with chronic illness) and a chance to correct mistaken beliefs or perceptions that could affect their care. Using a reflective listening strategy can take practice. If a patient says something at odds with the evidence, for example, or uses threatening or hostile language, one’s natural reaction is to immediately defend oneself, rebut the charges, or deny the underlying assumptions. This can quickly create confrontation or a power-struggle that can be difficult to reverse. In these situations it’s important to pause before speaking, and then to consciously try to simply re-state what the patient just said. For example, a patient may say, “Doctor, those pills you gave me don’t work—I told you before that I need something stronger.” A directly confrontational response will probably be ineffective. A better response would be something like “You seem to be irritated with me because you don’t think the medications I prescribed are working for you.” In summary, reflective listening techniques provide several advantages: 19 • They are less likely to evoke or exacerbate patient defensiveness • They encourage the patient to keep talking and reveal more about their true feelings • They communicate respect and caring, and encourage a therapeutic alliance • They open an opportunity for the patient to clarify exactly what he or she means BEFORE MOVING ONTO THE NEXT SECTION, PLEASE COMPLETE CASE STUDY 1 ON THE NEXT PAGE. Preference patterns for hypothetical situations Evidence suggests that patients are more likely to accept treatment for conditions they consider better than death and to refuse treatment for conditions they consider worse than death. Patients also were more likely to accept treatments that were less invasive such as CPR than invasive treatments such as mechanical ventilation (see Table 1).
Patients were more likely to accept short-term or simple treatments such as antibiotics than long- term invasive treatments such as permanent tube feeding. Table 1. Treatment preferences among patients age 64 and over, from most- to least-preferred 21 Antibiotics Blood transfusion Temporary tube feeding Temporary respirator Radiation Amputation Dialysis
Chemotherapy Resuscitation Permanent respirator Permanent tube feeding
It is telling that physicians, who are in a better position than others to judge the likely value of EOL services, often choose much less aggressive treatments for themselves than they offer to their patients. A study comparing 78 primary care faculty and residents with 831 of their patients found that the physicians were much less likely than the patients to want five of six specific treatments if they were terminally ill. 20 And 59% of the physicians chose “least aggressive” EOL treatment preferences for themselves. Acceptance or refusal of invasive and noninvasive treatments under certain circumstances can predict what other choices the patient would make under the same or different circumstances. Refusal of noninvasive treatments such as antibiotics strongly predicted that invasive treatments such as major surgery would also be refused. Research also reveals that patients were more likely to refuse treatment under hypothetical conditions as their prognosis became worse. For example, more adults would refuse both invasive and noninvasive treatments for a scenario of dementia with a terminal illness than for dementia only. Adults were also more likely to refuse treatment for a scenario of a persistent vegetative state than for a coma with a chance of recovery. More patients preferred treatment if there was even a slight chance for recovery from a coma or a stroke. Fewer patients would want complicated and invasive treatments if they had a terminal illness. Finally, patients were more likely to want treatment if they would remain cognitively intact rather than impaired.
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Instructions: Spend 5 minutes reviewing the case below and considering the questions that follow. Case Study 1
Janet is an 83-year-old woman with amyotrophic lateral sclerosis (ALS). Her speech has become very slurred, she is having difficulty chewing and swallowing, and has lost 40 pounds over the course of the past 18 months. She has never liked what she calls the “medical establishment,” takes no prescription drugs, and prefers natural and alternative methods of dealing with health issues. Her neurologist and her three grown children are all concerned about her weight loss and growing frailty and have suggested she have a percutaneous endoscopic gastrostomy (PEG) tube placed so she can get more adequate nutrition and hydration. Janet, however, is not cooperating. She has delayed making a decision and appears unwilling to discuss the matter with anybody. She is now sitting in your office, with one of her sons present, and has just replied angrily to your statement that further delays in getting a feeding tube will hasten her death. “What if I don’t see the point in continuing to live, doctor?” she says, struggling to enunciate the words. “Has it crossed your mind that I might not enjoy living under these horrible conditions?”
1. What would be a possible response to Janet’s outburst that would employ the technique of reflective listening?
2. How could you work with Janet to establish a set of care goals that would be appropriate for either course of action (i.e., having, or not having, the PEG placed)?
3. If Janet refuses the PEG, what steps could you take to make her final weeks more comfortable?
4. If Janet continues to feel as though her quality of life is not what she’d want to continue with, are there standardized approaches that could help you address her goals of care in a succinct, state-wide applicable document?
Advance planning helps physicians provide care that patients want Most people will eventually die from chronic conditions. These patients require the same kind of advance care planning as those suffering from predictably terminal conditions such as cancer. Understanding preferences for medical treatment in patients suffering from chronic illness requires that physicians and other health care providers consider patients’ concerns about the severity of prospective health states, length and invasiveness of treatments, and prognosis. While predicting what patients might want is difficult, research offers some insights into treatment patterns and preferences under hypothetical situations that can give providers more insight into their patients’ desires under similar circumstances. By discussing advance care planning during routine outpatient visits, during hospitalization for exacerbation of illness, or when the patient or physician believes death is near, physicians can improve patient satisfaction with care and provide care at the end of life that is in accordance with the patient’s wishes. Suggested components of an individualized approach to EOL care are summarized in Table 2.
Patients prefer to receive such news in person, with the physician’s full attention, and in clear, easy-to-understand language with adequate time for questions. Most patients prefer to know their diagnosis, but the amount of desired details varies among different cultures and by education level, age, and sex. The physician should respect the patient’s unique preferences for receiving bad news. Physicians may experience stress related to providing bad news that extends beyond the actual conversation. For example, physicians may be afraid of eliciting an emotional reaction, being blamed for the bad news, and expressing their emotions during the process. Physicians often withhold information or are overly optimistic regarding prognosis, but this can lead to confusion for patients regarding their condition. There are several algorithms available to help guide the physician in the delivery of bad news, including the SPIKES protocol (see Table 3, pg. 56). Skillful delivery of bad news can provide comfort for the patient and family. BEFORE MOVING ONTO THE NEXT SECTION, PLEASE COMPLETE CASE STUDY 2 ON PG. 8.
Communicating life-altering news “ The best way to convey meaning is to tell people what the information means to you yourself. And there are three words to do that: “I am worried.” They were such simple words, but it wasn’t hard to sense how much they communicated. I had given her the facts. But by including the fact that I was worried, I’d not only told her about the seriousness of the situation, I’d told her that I was on her side—I was pulling for her. The words also told her that, although I feared something serious, there remained uncertainties—possibilities for hope within the parameters nature had imposed. ” 22 --Atul Gawande, MD Delivering bad or life-altering news to a patient is one of the most difficult tasks physicians encounter. 23 Ultimately, the determination of what is bad news lies not with the physician, but with the person receiving the news. Although classically related to cancer or a terminal diagnosis, bad or serious news may also include information related to diagnosis of a chronic disease (e.g., diabetes mellitus), a life-altering illness (e.g., multiple sclerosis), or an injury leading to a significant change (e.g., a season-ending knee injury). Most of the research into the delivery of bad news, however, has focused on patients with cancer and subsequently applied to the delivery of bad or serious news in non-oncologic settings.
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Table 2. Components of individualized EOL care 2
Component
Rationale
Frequent assessment of the patient’s physical, emotional, social, and spiritual well-being Management of emotional distress Offer referral to expert-level palliative care Offer referral to hospice if the patient has a prognosis < 6 months. Management of care and direct contact with patient and family for complex situations by a specialist level palliative care physician Round-the-clock access to coordinated care and services
Interventions and care should be based on accurately identified needs.
All clinicians should be able to identify distress and direct its initial and basic management. This is part of the definition of palliative care, a basic component of hospice, and clearly of fundamental importance. People with palliative needs beyond those that can be provided by non-specialist-level clinicians deserve access to appropriate expert-level care. People who meet the hospice eligibility criteria deserve access to services designed to meet their end-of-life needs. Care of people with serious illness may require specialist-level palliative care physician management, and effective physician management requires direct examination, contact, and communication.
Patients in advanced stages of serious illness often require assistance, such as with activities of daily living, medication management, wound care, physical comfort, and psychosocial needs. Round-the-clock access to a consistent point of contact that can coordinate care obviates the need to dial 911 and engage emergency medical services. Management of pain and other symptoms All clinicians should be able to identify and direct the initial and basic management of pain and other symptoms. This is part of the definition of palliative care, a basic component of hospice, and clearly of fundamental importance. Counseling of patient and family Even patients who are not emotionally distressed face problems in such areas as loss of functioning, prognosis, coping with diverse symptoms, finances, and family dynamics, and family members experience these problems as well, both directly and indirectly.
Family caregiver support
A focus on the family is part of the definition of palliative care; family members and caregivers both participate in the patient’s care and require assistance themselves. Person-centered care requires awareness of patients’ perspectives on their social environment and of their needs for social support, including at the time of death. Companionship at the bedside at time of death may be an important part of the psychological, social, and spiritual aspects of end-of-life care for some individuals. The final phase of life often has a spiritual and religious component, and research shows that spiritual assistance is associated with quality of care. Care must be person-centered and fit current circumstances, which may mean that not all the above components will be important or desirable in all cases.
Attention to the patient’s social context and social needs
Attention to the patient’s spiritual and religious needs Regular personalized revision of the care plan and access to services based on the changing needs of the patient and family
Culturally Sensitive Communication Communicating effectively with both patients and their loved ones requires an awareness of some of the cultural differences that can create unexpected barriers or misunderstandings. End- of-life discussions are particularly challenging because of their emotional and interpersonal intensity. Many physicians are unfamiliar with common cultural variations regarding physician- patient communication, medical decision making, and attitudes about formal documents such as code status guidelines and advance directives. 25 Although cultural differences certainly exist, generalizations about specific cultures are not always applicable to specific patients because there is wide variation in the ways that individuals adhere or adopt the stereotypical beliefs, values, or attitudes of a particular culture. In fact, research suggests that when compared with whites of European descent, ethnic minorities exhibit greater variability in their cultural beliefs and preferences. 26 Clinicians should be aware that different cultures may place different emphasis—or disagree completely—with principles of medical conduct that
they take for granted. For example, in the United States, legal documents such as advance directives and durable powers of attorney are strategies to prolong autonomy in situations in which patients can no longer represent themselves. Other cultures, however, de-emphasize autonomy, perceiving it as isolating rather than empowering. These non- Western cultures believe that communities and families, not individuals alone, are affected by life- threatening illnesses and the accompanying medical decisions. 27 Cultures valuing non-malfeasance (doing no harm) may try to protect patients from the emotional and physical harm caused by directly addressing death and end-of-life care. Many Asian and Native American cultures value beneficence (physicians’ obligation to promote patient welfare) by encouraging patient hope, even in the face of terminal illness. Patient or family member preferences for nondisclosure of medical information and family-centered decision making may also be surprising to American-trained physicians.
Physicians may improve their rapport with ethnically diverse patients simply by showing interest in their cultural heritage, and more importantly, in each individual’s respective approach to both suboptimal news, and approach to death and dying. Here are some example questions and situations that reflect a culturally sensitive approach to patient interactions: 25 “Some people want to know everything about their medical condition, and others do not. What is your preference?” “Do you prefer to make medical decisions about future tests or treatments for yourself, or would you prefer that someone else make them for you?” To patients who request that the physician discuss their condition with family members: “Would you be more comfortable if I spoke with your (brother, son, daughter) alone, or would you like to be present?” If the patient chooses not to be present: “If you change your mind at any point and would like more information, please let me know. I will answer any questions you have.
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