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Surviving Health Care
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Book description

This book serves as a tool to help patients and families deal rationally with the perplexing and often irrational world of healthcare. It covers the topics and addresses the challenges that experts in a variety of healthcare fields believe to be the most vital to meeting the challenges of decision-making when people feel most vulnerable. With contributions from leading healthcare specialists, Surviving Health Care: A Manual for Patients and their Families examines a wide array of topics, including advance planning for healthcare, medical emergencies, genetic testing, pain management, and care of elders. It is a unique resource that aims above all to help patients reach their best healthcare decisions.

Reviews

"...Overall, this volume is a very good guide for individuals with little or moderate knowledge of the health care field.... Recommended..."
L. Synovitz, Southeastern Louisiana University, CHOICE

"This book is an excellent resource for anyone with questions about accessing health care. The work is comprehensive and yet not overly technical. The editor includes chapters with numerous suggestions to prepare a health care consumer to address common health care issues. The central theme is for consumers to be informed so they can be more active in the treatment process as well as advocate for quality care. ..this book is an excellent resource for social work students, practitioners, and educators interested in medical social work. The material included in this book provides a comprehensive, but quick, reference on health care issues that can be used over and over again. This book also presents ethical issues that are central to the delivery of health care, which, given their complexity, can be used to stimulate further discussion."
--Dr. Ann M. Callahan, Lincoln Memorial University, Journal of Social Work, Values, and Ethics

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Contents

  • 1 - Letter to Patients
    pp 1-12
  • On Becoming the “Good” Patient and Finding the “Right” Doctor
  • View abstract

    Summary

    We are currently living in the historical wake of the patient autonomy movement. We are seeking better ways to be good doctors and good patients, ways that avoid excesses of both medical paternalism and patient autonomy. We are moving toward a pluralistic conception of the doctor-patient relationship, in which there is no one "good" way to be a patient and in which there is no one "right" relationship between doctor and patient. Being sick may be filled with strong and sometimes conflicting emotions, with contradictory and confusing impulses. In today's world, patients could use a survival manual to navigate the frightening and confusing terrain of both illness and medical care. Despite the medical advances of the past half-century, being sick seems to have become more, rather than less, complex. No longer can we rely on a single good or right way of being either a patient or a doctor.
  • 2 - Becoming an Active Member of Your Health Care Team
    pp 13-25
  • View abstract

    Summary

    Social, cultural, and legal factors indigenous to the United States have produced a unique health care system comprising many competing insurers and plans, each with its own bureaucracy. In this chapter, the author suggests us to spend time searching for the doctor who is right for us and then have confidence in our doctor. He advices us to be prepared for each visit to the doctor's office, be tech-savvy, and appreciate the importance of follow-up. He stresses the need to take more responsibility for our own care, seek information, discuss compliance issues openly with our doctor, work with our doctor to overcome clinical inertia, and practice personal preventive health care. The future holds challenges and promise for us all, but it will require an active approach and receptivity to novel solutions for us to maximize our health outcomes.
  • 3 - Information That Will Help You with Advance Planning for Your Health Care
    pp 26-45
  • View abstract

    Summary

    At some point in our lives, most of us have to make decisions about our health care. Some of these decisions are relatively simple and straightforward. One reason for advance planning is the very real possibility that we may one day lack the capacity to make health care decisions for ourself. Another reason for advance planning is to minimize the burden on our loved ones. Advance directives are instruments by which we can formally specify in writing our preferences regarding health care decision making if and when we lose our ability to decide for ourself. Instruction directives give general guidelines and/or specific instructions for decision making about your health care in the event we can't decide for ourself. A proxy directive designates a surrogate to make decisions for us if we no longer can do so.
  • 4 - Responding to Medical Emergencies
    pp 46-55
  • View abstract

    Summary

    Health care workers are not omniscient and need accurate information about medical conditions to give the best possible treatment. During emergency, we may not recall all the information they need to make good decisions. The author suggests us to always carry a wallet card with the basic information that ambulance and hospital caregivers will need, and to put our doctor's regular and after-hours contact information on bright-colored paper in a prominent place in our home, such as on the refrigerator, so that our relatives or the ambulance personnel can find it immediately. For symptoms that have lasted a long time, the author advices us to ask a friend, our mother, or our spouse about it, or go online and read about it, or call a nurse referral line, or contact our physician, or call a physician friend/relative, or call 911 or the local equivalent.
  • 5 - What You Need to Know about Medical Errors
    pp 56-68
  • View abstract

    Summary

    This chapter explains how and why errors happen and offers practical advice to help protect us from becoming the victim of medical error. Errors may have numerous causes. Some errors result from failure of equipment or an institutional system; others are consequences of some human deficiency, such as lack of knowledge, breakdown in communication, or failure of professional responsibility. We all want to improve our understanding of how errors occur so that we can put measures in place to improve the health and safety of patients by decreasing the number and severity of medical errors. For that reason, medical facilities have instituted specific procedures to avoid certain kinds of errors. Every patient should know about their medical problems, the diagnostic plan, and the treatment plan to help avoid medical errors.
  • 6 - Being Informed When You Give Consent to Medical Care
    pp 69-84
  • View abstract

    Summary

    The chapter focuses on a series of important questions and answers we will need to consider to ensure that our rights and those of our loved ones are protected when seeking or undergoing medical treatment. There are two broad categories of medical interventions: diagnostic and therapeutic. Patients are entitled to know what conditions are in the differential diagnosis before being asked to consent to any tests or procedures. Cost is probably the most controversial item on the list of essential elements of an informed consent. To understand the role of informed consent in the medical profession, it is critical to have at least a rudimentary sense of when and how the concept is originated. The only way to increase the chance we will be provided all the information we need or may wish to receive is to be persistent and assertive in pursuing it.
  • 7 - Beware of Scorecards
    pp 85-95
  • View abstract

    Summary

    Scorecards are presented as reliable measures of medical outcomes. They are used as a means for measuring the quality of care provided and as a tool for negotiating fees for medical services. The existence of scorecards reflects our society's desire for openness and transparency in public affairs. The problem with scorecards and other publicly accessible ratings is that some of the recommendations they issue do not warrant the reliance of the public. In other words, scorecards that present ratings of medical professionals and medical institutions may themselves be untrustworthy. Scorecards are designed to encourage physicians to achieve "target rates" for health care interventions. Scorecards have been touted as a mechanism to improve patient care, advance patient decision making, and hopefully improve health outcomes. We need to be aware of how ratings of physician performance may affect your physician's clinical judgment, recommendations, and communication.
  • 8 - Transplantation 101
    pp 96-123
  • Negotiating the System
  • View abstract

    Summary

    This chapter educates us about renal transplantation in the hope of reducing anxiety, developing realistic expectations, avoiding unpleasant surprises, and enhancing understanding so that we will be able to make informed choices at the many decision points along the way. The chapter uses a question-and-answer format, addressing what we believe are the most common and important concerns faced by people considering kidney transplantation. It provides a broad overview of transplantation and offers general guidance to help us navigate the process. Two new approaches to donor recruitment are being used: transplant tourism and living donor solicitation via the Internet. Renal transplantation is a complicated, expensive, time-consuming, and hazardous process. Nevertheless, because transplantation is so successful and the only treatment that can fully restore kidney function, generally the benefits far outweigh the risks.
  • 9 - When the Illness Is Psychiatric
    pp 124-135
  • View abstract

    Summary

    Psychiatric diagnoses, for the most part, are based on the information reported by the patient (and sometimes by third parties, such as family and friends) and on the observations made by an examining psychiatrist. Most psychiatric consultations involve one or two meetings, each lasting anywhere from forty-five minutes to an hour and a half. Sometimes the psychiatrist will extend the consultation process beyond two sessions. Psychiatric treatments can be divided broadly into three categories: biological treatments, psychological treatments, and social treatments. Recent decades have witnessed an explosion of research on the brain and the biology of psychiatric illness, including a search for genetic causes of mental diseases. From the pharmacological relief of difficulties in thought and mood to the psychotherapeutic untangling of self-defeating relationship patterns, psychiatry offers the possibility of living a healthier, more fulfilling life.
  • 10 - On the Horizon
    pp 136-145
  • Genetic Testing
  • View abstract

    Summary

    This chapter discusses basic concepts in genetics, addresses more focused questions relating to genetic testing, and makes recommendations about whether genetic testing is right for us and, if so, how to proceed. Genetic testing has both benefits and limitations, and the decision whether to be tested is personal and complex. Better understanding of how genes influence health eventually will lead to more effective ways to treat, cure, and prevent disease. Privacy of health information is critical to the physician-patient relationship. Patients must be able to trust their physicians to respect the confidentiality of their intimate personal health information, which is essential to proper diagnosis and treatment of their conditions. Genetic counseling most often is "nondirective" in that the counselor provides enough information to allow you to determine the best course of action for you but does not make testing recommendations.
  • 11 - To Be or Not to Be – A Research Subject
    pp 146-162
  • View abstract

    Summary

    This chapter reviews the basics of being a research subject, including the potential benefits and risks of making important decision. Of course, patients are not the only people approached to participate in medical research. Many projects involve healthy people. In fact, the earliest stages of research on any new medication almost always involve testing healthy people to determine side effects and correct dosages. The first step in deciding whether to participate in a research study is to understand what research is and how it differs from medical treatment. The goal of medical research is to obtain information that can improve health and medical care in the future. Some clinical trials are designed to study a medical procedure or device, rather than a drug. Although research involves some type of inconvenience, not all research is physically risky.
  • 12 - Information That Will Help You Make Health Care Decisions for Adult Family Members
    pp 163-178
  • View abstract

    Summary

    Unlike infants and young children, adults generally have the ability to make medical decisions for themselves. Generally, if an adult loses decision-making capacity, one or more family members will be asked to make decisions for him or her. This chapter provides information for people who may be called to be a surrogate for an adult family member. The chapter discusses how to prepare to become a surrogate. This information is of particular interest to people who are not currently serving as a surrogate. The chapter presents information intended to make it easier for a person to be an effective surrogate. Surrogate decision making may be a group process involving several family members. Some physicians prefer to communicate with one spokesperson for the family. This arrangement may increase the efficiency of interactions with physicians and may be suitable for some families.
  • 13 - Caring for Individuals with Alzheimer's Disease
    pp 179-190
  • Ethical Issues along the Way
  • View abstract

    Summary

    This chapter discusses a variety of issues that caregivers may confront in different stages of the Alzheimer's disease, and suggests further reading and useful resources. Truth telling in the context of Alzheimer's disease should be handled as it is in other medical contexts. Individuals with dementia may begin to have trouble managing independently in several aspects of their lives. Ideally, we can create a living environment for those affected by dementia that is both safe and respectful of their choices and independence. It is important for people with Alzheimer's disease to discuss their values and preferences with their loved ones before their cognitive abilities become too impaired. With the assistance of caregivers, patients can continue to experience measure of self-governance and thus be assured as the disease progresses of ongoing respect for their safety and human dignity.
  • 14 - When the Patient Is a Child
    pp 191-205
  • View abstract

    Summary

    Patient's competence is one of the most important factors in making informed decisions. It represents the ability to understand the situation and possible outcomes and to consider the consequences of choices he or she makes. Patients who are legally deemed to be minors cannot independently make decisions about their health care, with certain exceptions. Health care decisions for minors are made by their parents or guardians. This is known as surrogate or proxy decision making. It is known that knowledge of the illness and treatment options increases child's feeling of control and ability to cope with the illness. Potential problems arise when an adolescent and his or her parents or health care team disagree on how to proceed with treatment. When children are patients, their parents may be approached by the health care team to ask their permission for their children to participate in a research study.
  • 15 - Care of Elders
    pp 206-221
  • View abstract

    Summary

    This chapter discusses the need to understand about the care of people who are "of a certain age". In general, changes associated with aging are caused by repeated exposure to the stresses of life, which lead to progressive decrease in function of organs and the body as a whole. The term geriatric syndrome refers to a problem or set of problems that is common in elders. Such a syndrome may be complex, having more than one cause and affecting more than one body system. Sometimes the treatment of a geriatric syndrome may be quite simple and can significantly enhance the quality of patient's life. Geriatricians receive specialty training in medicine and have the special concerns of elders in mind. Geriatricians help their patients to preserve functional capacity, to live as well as possible with chronic diseases, to prevent and treat geriatric syndromes, and to use medications judiciously.
  • 16 - Being and Thinking
    pp 222-245
  • View abstract

    Summary

    This chapter describes survival strategies for challenges related to our health and well-being. Many of the accusations hurled against parents and physicians as part of the debate over ADHD are unfair and untrue. However, it is the case that attention-deficit hyperactivity disorder (ADHD) diagnoses and stimulant drug use to treat this condition have risen sharply over the past decade throughout the world. Stimulant drugs are the most common form of treatment for ADHD. In the largest study of ADHD treatments to date, stimulants were found to be more effective than behavioural therapy, and more effective than behavioural therapy combined with stimulant drugs. Stimulants also have side effects, although these usually are mild. However, they may interfere with sleep and appetite and suppress child's growth very slightly. More severe side effects are rare.
  • 17 - A Patient's Guide to Pain Management
    pp 246-263
  • View abstract

    Summary

    With the rise of modern medicine and many remarkable advances in medical science and technology, many previously incurable diseases became curable or at least manageable for longer period of time. Pain, in a positive sense, is a defense mechanism and a survival strategy. There are certain individuals with maladies that prevent them from feeling pain, even when they sustain a severe injury. There are two essential components to addressing pain in patient care: assessment and management. Pain often is divided into three broad categories: acute, chronic, and terminal/end-of-life. Chronic pain can be very challenging to physicians, patients who suffer from it, and the patients' families. The common term pain management is used to describe the process by which health care professionals seek to reduce patient's pain to a tolerable level with minimum adverse side effects from any medication that may be prescribed.
  • 18 - The Hardest Decisions
    pp 264-278
  • When Treatment Stops Working
  • View abstract

    Summary

    This chapter describes some of the hardest decisions sick people, and their families, face. Experimental treatments and drug trials can offer hope by providing the option of doing something when it seems all other doctors have given up. Hospice is a comprehensive plan of care for terminally ill people focusing on maximizing comfort and improving quality of life, without further treatment of the underlying disease process. Hospice programs are designed to maximize quality of life for terminally ill patients. They employ specially trained physicians and hospice nurses to manage pain and other symptoms. Medications based on opioids including morphine, hydrocodone, oxycodone, hydromorphone, fentanyl, and methadoneare are the best available for controlling pain and shortness of breath. Opioids can affect the body's drive to breathe, which is why overdoses of pain medications can be fatal.
  • 19 - What You Need to Know about Disasters
    pp 279-293
  • View abstract

    Summary

    The first section of this chapter explores the concept of risk what it means, how it is assessed, and how we should think about it. The second section covers information we can use to construct a family disaster plan, including commentary on basic tactics and helpful gear. In our day-to-day lives, most of us are inconsistent in our management of risk. The greatest disaster risks come from natural disasters that vary geographically. For those constructing family disaster plans, the best situation is to reside in a low-risk area, in a sturdy private dwelling with significant surrounding property containing a water source and plentiful edible flora and fauna. With a little study and advance preparation, we can greatly increase our odds, and those of our loved ones and dependent family members, of surviving a major disaster.
  • 20 - Making the Internet Work for You
    pp 294-310
  • Researching Your Health Questions
  • View abstract

    Summary

    This chapter focuses on a few excellent health websites and on techniques for evaluating other health information sites we may find in our explorations. It helps us become comfortable conducting an online health information search, learn to explore and become familiar with several reliable health websites, and understand and apply evaluation techniques to unfamiliar health websites. Genetics home reference contains consumer information about genetic conditions and the genes or chromosomes responsible for those conditions. Household products database contains information about thousands of brand-name household products and their potential health effects. Consumers have access to more medical information than ever before. The Web and its sophisticated search tools have resulted in a greater number of patients accessing Internet health information. The best way to find health information on the Web is to go to the sites we know have reliable, accurate, current, and unbiased information.

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