|Informed consent, a patient’s bill of rights, advance directives. . . Don’t wait until you’re sick to find out how these protections might impact your medical care, as well as how you can ensure your wishes are respected.|
A woman languishes in a hospital delivery ward, with sensors tightly strapped to her bulging belly to monitor the heart beats of her unborn twins. Her contractions had started shortly after her sixth month of pregnancy, bringing with them every fear an expectant mother tries to keep at bay. But after 12 hours of not being able to move an inch to avoid cutting the sensors’ tenuous connection to the tiny heart beats, she could not take the pain or the fear anymore. When she pleaded with the doctor to remove the tight belt for a few moments respite, she was harshly told that her “selfishness” might jeopardize her daughters’ lives. After agonizing a while longer over the possible repercussions of her actions, the woman decided that her extreme discomfort might harm her babies even more, and she opted to have the sensors removed for brief rest breaks.
This unpleasant tug of war could have been avoided if both doctor and patient realized that the old school “Physician knows best” attitude is being replaced by a team approach in which the informed patient and doctor make decisions together. Although many health professionals accept this concept in theory, they have been slow to put it into practice. As a result, patients are still often unaware that they’re entitled to a thorough explanation of medical treatments, which spells out the benefits, risks, and alternatives of any procedure. What’s more, doctors should also make it clear—and accept the fact—that a patient has the right to delay, refuse or withdraw permission for a particular therapy at any time.
Below is an explanation of what “informed consent” means to you and your doctor, as well as an outline of the American Hospital Association’s Patient’s Bill of Rights.
As a patient, you are entitled to know everything relevant to your treatment and, based on that information, to accept or refuse it. The basic premise behind informed consent is pure common sense: it’s your body, and you have to live with the consequences of treatment. Every hospital asks patients to sign a release form, which gives the institution the right to treat them. The details of that form vary from hospital to hospital, but some general advice holds true in most cases. Read whatever you sign carefully. Don’t be afraid to ask questions if you don’t understand any details included in the form or if it doesn’t clarify everything you want to know about your treatment. Avoid signing an open release form, which allows the hospital to do whatever it wants.
The bottom line is that you must protect yourself by being an active participant in your medical care. So if you ask about procedures or tests and are told “Don’t worry, it’s routine,” insist on your right to know all the details. To make informed health care choices, you must make sure that your physicians provide the following information:
• A description of the recommended treatment or procedure.
• A description of the risks and benefits of the recommended treatment or procedure, with emphasis on the risk of death or serious disability.
• A description of alternative treatments and procedures, together with the risks and benefits of each.
• The likely results should you decide to refuse any treatment.
• The probability of success, and what the physician means by success.
• The major problems anticipated in recuperation, including how long until you can resume your normal activities.
• Any side effects that may be particularly damaging to you personally. For example, an operation that might cause a little numbness in one finger might not be too big a deal to most people, but if you play the flute for a living it could be devastating.
• Any other information patients in your situation generally receive, such as cost and how much your health plan will cover.
The American Hospital Association first drafted a Patient’s Bill of Rights in 1973. Keep in mind, however, that these are the hospital’s—not a consumer’s—view of your rights. Additionally, rights are only as good as the facility’s enforcement of them. The fact is that in most cases protecting your rights is up to you and your family.
• You have the right to receive respectful care.
• You have the right to relevant, current and understandable information concerning your diagnosis, treatment and prognosis. Except in emergencies, when you are unable to make decisions and the need for treatment is urgent, you are entitled to request information related to the specific procedures and/or treatments recommended, the risks involved, the possible length of recuperation, and the medically reasonable alternatives.
• You have the right to know the identity of physicians, nurses and others involved in your care and to know when those involved are students, residents or other trainees. You also have the right to know the immediate and long-term financial implications of treatment choices.
• You have the right to make decisions about the plan of care prior to and during the course of treatment and to refuse a recommended treatment to the extent permitted by law and hospital policy. In the case of such refusal, you are still entitled to be informed of the medical consequences and to other appropriate care and services that the hospital provides, or to transfer to another hospital. That hospital, in turn, should notify you of any policy that might affect your choice.
• You have the right to have an advance directive (such as a living will, health care proxy, or durable power of attorney for health care) concerning treatment or designating a surrogate decision-maker with the expectation that the hospital will honor the intent of that directive to the extent permitted by law and hospital policy. The institution should advise patients of their rights under state law and hospital policy, ask if the patient has an advance directive and, if so, include it in the patient’s records and make clear any policy that may limit such an advance directive.
• You have the right to every consideration of privacy. Case discussion, consultation, examination and treatment should be conducted so as to protect each patient’s privacy.
• You have the right to expect that all communications and records pertaining to your care will be kept confidential (except in cases such as suspected abuse and public health hazards when reporting is permitted or required by law), and that the hospital will emphasize the confidentiality of this information when it releases it to any other parties entitled to review information in these records.
• You have the right to review the records pertaining to your medical care and to have the information explained or interpreted as necessary, except when restricted by law.
• You have the right to expect that, within its capacity, the hospital will make reasonable response to your request for medical care. The hospital must provide evaluation, service, and/or referral as indicated by the urgency of the case. When medically appropriate and legally permissible, or when you have so requested, you may be transferred to another facility. The institution to which you are to be transferred must first have accepted you for transfer. You must also have the benefit of a complete explanation of the need for, risks, benefits, and alternatives to such a transfer.
• You have the right to ask to be informed of the existence of business relationships among the hospital, educational institutions, other health care providers, or payers that may influence your treatment and care.
• You have the right to consent to or decline to participate in proposed research studies or human experimentation affecting care and treatment or requiring direct patient involvement, and to have those studies fully explained prior to consent. If you decline to participate in research or experimentation, you are entitled to the most effective care that the hospital can otherwise provide.
• You have the right to expect reasonable continuity of care when appropriate and to be informed by health care providers of available and realistic patient care options when hospital care is no longer appropriate.
• You have the right to know of hospital policies and practices that relate to patient care, treatment and responsibilities and to be informed of available resources for resolving disputes, grievances and conflicts available in the institution. You also have the right to be informed of the hospital’s charges for services and available payment methods.
The effectiveness of your care depends, in part, on your fulfilling certain responsibilities. Those outlined below are in your best interests and can mean the difference between a treatment that works and one that doesn’t.
• Provide accurate information about past illnesses, hospitalizations, medications, family history, life-style habits and other matters related to health. Everything you tell your physician is, by law, completely confidential, so don’t hesitate to describe anything that might be related to your condition. No matter how embarrassing you might think it is, doctor’s have seen and heard a lot worse and your honesty could ensure that the treatment is successful.
• Make sure you clearly understand your health status and the treatment plan. To effectively make decisions about your care, you must request as much additional information or clarification as you find necessary.
• Inform your physician if you anticipate any problems following the prescribed treatment. If you tell your doctor in advance about scheduling or other reasons why you might not be able to completely follow a treatment plan, adjustments could be made to fit your needs. But, if you just interrupt your treatment plan or don’t follow it precisely, your recovery could be compromised.
• Recognize the impact of your life-style on your personal health. Do not depend solely on medicine to keep you healthy or cure you if you fall ill. For example, if you go to your doctor with symptoms of heart disease and a low-fat, low-cholesterol diet is recommended as part of your treatment plan, you must recognize that there is only so much medications can do if you refuse to change your habits.
Have you ever considered how you would want to be treated if you had an accident or a stroke that left you in a coma? What if you were being kept alive by machines? How long would you want to live under those conditions? Not enough people think about such events and even fewer take steps to ensure that their wishes will be respected in such a crisis. That is what advance directives are all about: your instructions about your future medical care in the event that you become unable to speak for yourself.
There are two types of advance directives: A living will, your written wishes about what medical treatment you would not want should you be unable to communicate, and a medical power of attorney, a document that lets you appoint someone you trust to make decisions about your medical care if you cannot make decisions for yourself.
Your right to accept or refuse treatment is protected by constitutional and common law, and by the federal Patient Self-Determination Act (PSDA), which requires all health care facilities that receive Medicare or Medicaid funds to inform patients about their rights to refuse medical treatment or to sign advance directives. Still, each state regulates the use of advance directives differently and many physicians and hospitals are resistant to following them. In fact, according to a survey described in the January 1993 issue of the American Journal of Public Health, doctors admitted over treating dying patients with life-prolonging measures and inadequately treating their pain. In addition, another survey showed that many professionals incorrectly think that the permission to withhold or withdraw treatment applies only to heroic measures, like CPR, and not to ordinary measures like feeding the patient through a tube. That is why advance directives and a knowledge of the law is important.
For information and counseling on advance directives, and free state-specific forms to help you comply with local laws, contact Choice in Dying, Inc., a national non-profit organization, at 800-989-9455. The American Association of Retired Persons (AARP) also offers a pamphlet on writing advance directives (800-441-2277).