Patient Rights & Responsibilities Training

Patient Rights & Responsibilities Training 1

Objectives At the com pletion of this training the leaner will: Have an understanding of patient s rights in health care Responsibility of the patients in health care The role of the health care provider and staff in ensuring patient s right Understand patient rights in a variety of health care settings 2

Table of Content Introduction Background of Patient Rights Consent to Treat Background of Rights to Treatment and Patient Righ t Laws Patient s rights and Health Insurance: the Affordable Care Act Right to Treatment Patient Responsibilities Advance Directives Patient Confidentiality and HIPAA Residents Rights in Long Term Care Patient Rights in home health care Hospice Patients' Bill of Rights Patient Advocacy Su m m ary Introduction 3

As individuals, m ost of us believe that we are entitled to certain rights based on Federal and State Laws. Most Americans would agree that one of the greatest accom plishm ents of the U.S. Constitution is the Bill of Rights, which lists sets of rights and liberties considered essential to a people or group of people as free citizens of a democratic country. However, when we access healthcare, many of us are uncertain of what rights we have and even fewer us of consider that along with patient s rights, we have responsibilities too. Providing excellent health care services is built on a trusting relationship between patients, their families, and health care providers. However, today's health care environment makes effective communication between patients, families, and caregivers harder and harder to achieve. Medical care is more technologically complex, resources are constrained, and there is a growing need for patients and fam ilies to have m ore inform ation about, and involvem ent in, care decisions. The problem comes when patients are accessing health care and are unaware of what rights and responsibilities they have as patients. At issue, besides basic rights of care and privacy, is the education of patients concerning what to expect of their health care facility and its providers. Patients are often aware of their rights regarding patient privacy in regards to m edical records or doctor/ patient confidentiality, as determ ined through the federal HIPAA Act. However, many patients are not aware of what other rights they have when they come under the care of a Health Center. In response, individual facilities (like hospitals or health centers) or physician practices have often created their own list of patients' rights and responsibilities. Patient rights encom pass legal and ethical issues in the provider-patient relationship, including a person's right to privacy, the right to quality medical care without prejudice, the right to make informed decisions about care and treatment options, and the right to refuse treatment. Many issues comprise the rights of patients in the medical system, including a person's ability to sue a health plan provider; access to emergency and specialty care, diagnostic testing, and prescription m edication without prejudice; confidentiality and protection of patient m edical inform ation; and continuity of care. The patient is also expected to m eet a fair share of responsibility. This is usually expressed in a list of patient responsibilities that often require the patient to follow a plan of care, providing complete and accurate health information, and communicating comprehension of instructions on procedures and treatment. The patient is further responsible for consequences of refusal of treatment, of not following the rules and regulations of a health center, and of 4

not being considerate of others' rights. The patient is also often responsible for providing assurance that financial obligations of care are m et. The purpose of this training is to educate health care providers regarding general patients rights and responsibilities in the health care system. Background of Patient Rights 5

Patient rights are the legal interests of persons who subm it to m edical treatment. For many years, common medical practice meant that Providers made decisions for their Patients. This view has gradually been changed by: Promoting Patient autonomy, whereby Patients and Providers share the decision-m aking responsibility. Consequently Provider-Patient relationships are very different now than they were a few decades ago. Consent to Treat 6

Consent, particularly informed consent, is the cornerstone of Patient Rights. Consent is based on the inviolability of one's person. It means that the Provider does not have the right to touch or treat a Patient without the Patient's approval, because the Patient must live with the consequences and deal with any discomfort caused by treatment. A doctor can be held liable for committing a battery if the doctor touches the patient without first obtaining the Patient's consent. Consent must be: Voluntary Competent In form ed Volun tary means that, when the Patient gives consent, he or she is free from extreme duress, is not intoxicated, under the influence of medication and/or the Provider has not coerced the Patient into giving consent. Com petent: The law presumes that an adult is Competent. Competence is typically only challenged when a Patient disagrees with a Providers recommended treatment or refuses treatment altogether. If an individual understands the information presented regarding treatment, he or she is competent to consent to or refuse treatment. Simply consenting to treatment is not enough. A Patient must give Informed consent. In essence, informed consent means that before a Provider can treat or touch a Patient, they must be given some basic information about what the Provider proposes to do. Informed consent has been called the most important legal doctrine in Patient Rights. State laws and court decisions vary regarding inform ed consent, but the trend is clearly toward more disclosure rather than less. Informed consent is required not only in life-or-death situations but also in clinic, home health and outpatient settings as well. A healthcare Provider must first present inform ation the care to be provided, regarding risks, alternatives, and success rates. In form ed : Consent must be inform ed. A healthcare Provider must first present inform ation regarding the care to be provided, risks, alternatives, and success rates. The information must be presented in language the Patient can understand and typically should include the following: 7

A description of the recommended treatment or procedure; A description of the risks and benefits particularly exploring the risk of serious bodily disability or death; A description of alternative treatments and the risks and benefits of alternatives; The probable results if no treatment is undertaken; The probability of success and a definition of what the Provider m eans by success; Length and challenges of recuperation; and Any other inform ation generally provided to Patients in this situation by other qualified physicians. The information presented to a potential patient differs based on the type of provider such as a clinic, home health, hospital etc. Background of Rights to Treatment and Patient Right Laws In 1986, Congress passed the Emergency Medical Treatment and Active Labor Act (EMTALA) (42 U.S.C.A. 1395dd), which established criteria for emergency services and criteria for safe transfer of patients between hospitals. This statute 8

was designed to prevent "patient dumping," that is, transferring undesirable patients to another facility. The law applies to all hospitals receiving federal funds, such as Medicare (almost all do). The law requires hospitals to provide a screening exam to determ ine if an emergency condition exists, provide stabilizing treatment to any emergency patient or to any woman in active labor before transfer, and continue treatment until a patient can be discharged or transferred without harm. It also delineates strict guidelines for the transfer of a patient who cannot be stabilized. A hospital that negligently or knowingly and willfully violates any of these provisions can be terminated or suspended from Medicare. The physician, the hospital, or both can also be penalized up to $50,000 for each knowing violation of the law. Patient Self-Determination Act (PSDA), enacted in 1991, dictates that health care institutions certified by Medicare and/ or Medicaid m ust take steps to educate all adult patients and the larger community on their right to accept or refuse m edical care. HIPAA is a law passed by congress in 1996. HIPAA sets national standards for the protection of patient or client inform ation Patient s Rights and Health Insurance: The Affordable Care Act In the United States there have been a number of attempts to enshrine a patient's bill of rights in law, including a bill rejected by Congress in 2001. In 2010, a new Patient s Bill of Rights was created along with the Affordable Care Act. This bill of rights was designed to give new patient protections in 9

dealing with insurance companies. Some of the protections started in 2010, but others were phased in more slowly and take full effect in 2014. Here are some of the protections that apply to health plans under the new laws: Annual and lifetim e dollar lim its to coverage of essential benefits have been removed. (Essential benefits include doctor and specialist visits, home and hospice services, emergency services, hospitalization, preventive and wellness services, chronic disease management, laboratory services, prescription drugs, maternity and newborn care, pediatric services, mental health and substance use disorder services, and rehabilitative services and devices. Non-essential benefits include things like adult dental care.) People will be able to get health insurance in spite of pre-existing m edical conditions (m edical problem s they have before getting insurance). You have the right to an easy-to-understand summary of benefits and coverage. Young adults are able to stay on a parent s policy until age 26 if they m eet certain requirements. You re entitled to certain preventive screening without paying extra fees or co-pays. If your plan denies payment for a medical treatment or service, you must be told why it was refused, and how to appeal (fight) that decision. You have the right to appeal the payment decisions of private health plans (called an internal appeal ). You also have the right to a review by an independent organiz ation (called an outside review ) if the com pany still doesn t want to pay. Larger insurance companies must spend 80 to 85% of their premiums on health care and improvement of care rather than on salaries, overhead, and marketing. If you made an honest mistake on your insurance application, health insurance com panies will no longer be able to rescind (take back) your health coverage after you get sick. (They can still cancel coverage if you don t pay prem ium s on tim e, if you lied on your application form, or if they no longer offer plans in your region.) If a company does cancel your coverage, they must give you at least 30 d a ys n o t ice. Premium increases of more than 10% must be explained and clearly justified. Right to Treatment In an emergency situation, a Patient has a right to treatment, regardless of ability to pay. If a situation is likely to cause death, serious injury, or disability if not attended to promptly, it is an emergency. Cardiac arrest, heavy bleeding, profound shock, severe head injuries, and acute psychotic states are some examples of emergencies. Less obvious situations can also be emergencies: 10

broken bones, fever, and cuts requiring stitches may also require immediate treatment. Both public and private hospitals have a duty to adm inister m edical care to a person experiencing an em ergency. If a hospital has em ergency facilities, it is legally required to provide appropriate treatment to a person experiencing an emergency. If the hospital is unable to provide emergency services, it must provide a referral for appropriate treatment. Hospitals cannot refuse to treat prospective patients on the basis of race, religion, or national origin, or refuse to treat someone with HIV or AIDS. Patient Rights List As mentioned above, patients have certain rights, some are guaranteed by federal law, such as the right to get a copy of your medical records, and the right to keep them private. Many states have additional laws protecting patients, and healthcare facilities often have a patient bill of rights. The following is an exa m ple list of rights and responsibilities that health care Providers should post in their organizations with the intent to show the Providers concern for the Patient, and to emphasize the need for observance of these rights and responsibilities. As a Patient you have the right to... Considerate and respectful care provided in a safe environment, free from all form s of abuse, harassm ent or discrim ination. Participate in the development and implementation of your plan of care and actively participate in decisions regarding your m edical care. To the extent permitted by law, this includes the right to request and/ or refuse treatment. Be well inform ed about your illness, possible treatm ents, and likely outcomes of care (including unanticipated outcomes) and to discuss this information with your doctor. In an emergency, when you lack decisionmaking capacity and the need for treatment is urgent, the inform ation is made available to another person on your behalf. Have an advance directive (such as health care proxy, organ donation or living will) and the expectation that we will honor the intent of the directive to the extent permitted by law and hospital policy. 11

Upon your request, have a family member, chosen representative and/ or your own physician notified prom ptly of your adm ission to the hospital. Access to people outside the hospital by means of visitors and by verbal or written communication. Expect effective pain management to include the following: Express your pain and have that expression accepted and respected as the m ost reliable indicator of pain, Have your pain assessed systematically and thoroughly, Have your pain managed according to the most currently accepted m ethod s, Receive a prompt response to unrelieved pain, and Be inform ed and involved in all decisions regarding all aspects of your pain care. Patient Responsibilities Healthcare Providers and Organizations are entitled to reasonable and responsible behavior on the part of the Patient and his/ her Family. Su ch responsibilities m ay include, but need not be lim ited to the following: As a Pa tient you ha ve the responsibility to... Report perceived risks in your care and unexpected changes in your condition to the person in charge of your care. Follow the treatment plan recommended by your doctor. This m ay include following the instructions of nurses and other health care personnel who carry out doctor's orders and/or plan of care. Notify your Provider if you are unable to keep appointments for outpatient services. Provide, to the best of your knowledge, accurate and complete information about present com plaints, past illnesses, hospitalization, m edications and other matters concerning your health. Ask questions whenever you do not understand the information or instructions being provided. Assist with pain management by: Discussing relief with your healthcare providers Asking for pain m edication when pain first begins Advising your Provider-Physician or Nurse if you are in pain 12

Meet financial obligations regarding your health care as prom ptly as possible. Treat other patients and personnel with respect. Accept the consequences of your actions if you refuse treatment or if instructions are not followed. Be courteous and considerate of the needs of other patients, staff and hospital property. You are responsible for assisting in the control of noise and the number of visitors to your room. Respect the property of other patients, the staff and the hospital. Inform healthcare personnel of desired changes in your Advance Directives. Provide own safekeeping of clothing, money or any other personal possessions you choose to keep with you while you are in the facility. Recognize the effect of life-style on your personal health. Your health depends not just on your hospital care, but also on the decisions m ade in day-to-day living. Advance Directives The federal Patient Self-Determination Act (PSDA), enacted in 1991, dictates that health care institutions certified by Medicare and/ or Medicaid m ust take steps to educate all adult patients and the larger community on their right to accept or refuse medical care. This law also directs facilities to inquire on adm ission whether a Patient has made an advance directive, maintain policies and procedures on advance 13

directives, and provide this inform ation to Patients upon admission. Organizations must comply with the PSDA in order to receive reimbursement through the Medicare and Medicaid programs. The Patient Self-Determination Act (PSDA) requires providers to inform patients of their rights, under state law, to make decisions about their medical care and the right to formulate advance directives. The PSDA defines an advance directive as a, "written instrum ent, such as a living will or durable power of attorney for health care, recognized under state law relating to the provision of such care when the individual is incapacitated. To ensure com pliance with the PSDA, hospitals, including rural prim ary care hospitals, nursing facilities, providers of home health care, health maintenance organizations, competitive medical plans, and hospice programs certified by Medicare and/or Medicaid must: Maintain written policies and procedures on advance directives with respect to all adult individuals receiving medical care by or through the provider or organization; Provide written inform ation to each such individual concerning the individual's rights under state law (whether statutory or recognized by the state's courts) to make decisions concerning m edical care including: The right to accept or refuse medical or surgical treatm ent -- The right to formulate advance directives, and the facilities policies respecting the implementation of such rights; Document in the individual's medical record whether or not the person has executed an advance directive; Not condition the provision of care or otherwise discrim inate against an individual based upon whether or not the individual has executed an advance directive; Inform individuals that complaints concerning the advance directives requirements may be filed with the state survey and certification agency; Ensure that the facility com plies with state law concerning advance directives Educate staff on the facility's policies and procedures concerning advance directives; an d provide for community education. The educational materials must inform the public of their rights under state law to m a ke decisions a bout their m edica l ca r e, the right to for m u la te a dva nce directives, a nd the fa cility's im plem enta tion policies concer ning a n individua l's a dva nce directive. 14

Patient Confidentiality and HIPAA Wh at is HIPAA (Health Insurance Portability and Accountability)? HIPAA is a law passed by congress in 1996. HIPAA sets national standards for the protection of patient or client inform ation. HIPAA applies to health care providers, including hospitals, public health departm ents, m edical professionals, insurance companies, labs, home care companies, and surgery centers. HIPAA covers ALL forms of protected health information... oral, written, and electronic. 15

Your responsibility in HIPAA It is everyone s responsibility to take the confidentiality of patient or client inform ation seriously. Anytim e volunteers com e in contact with patient or client information (or any personal health information) written, spoken, or electronically transmitted, they become involved with some facet of the HIPAA regulations! It is for this reason that the law requires awareness training for all health care personnel, including volunteers. What is Protected Health Information (PHI)? According to HIPAA all of the following inform ation can be used to identify a patient or client: Addresses, Dates, Telephone or fax numbers, Social Security num bers, Medical records numbers, Patient or client account numbers, Insurance plan numbers, Veh icle inform ation, License numbers, Medical equipment numbers, Photographs, Fingerprints, Email addresses, Internet addresses This inform ation is referred to as individually identifiable health inform ation (IIHI). Rem oving a patient or client nam e from a chart is no longer sufficient to de-identify the patient or client. HIPAA refers to this information as protected health inform ation or PHI. Any health information that identifies someone or can be used to identify s om eon e MUST BE PROTECTED. Sharing patient or client inform ation HIPAA, under the Consent Rule, allows for the provider of care to use health information for Treatment, Payment, and Operations (TPO). Before HIPAA it was common to use patient or client information for other purposes and to share more than the minimum necessary information. Now patients or clients need to give prior authorization for the use of their health inform ation for non-tpo purposes. Under the Minimum Necessary Rule, health care workers should only have access to the information they need to fulfill their assigned duties. Wh at is TPO? HIPAA allows us to share patient or client inform ation for: Treatment Providing care to patients or clients Paym ent Getting paid for caring for patients or clients 16

Operations Norm al business activities such as quality improvement, training, auditing, custom er service, and resolution of grievances. If use of the information does not fall under one of these categories you must have the patient s or client s signed authorization before sharing that inform ation with anyone! What are the consequences of not complying with the law? Improperly sharing, use, or dispose of patient or client inform ation in the in violation of HIPAA regulations can result in fines and penalties. Yo u m u s t patient s privacy seriously. Wrongful and willful disclosure of health inform ation carries fines and can involve jail tim e. People in health care think they already do a good job protecting patient or client infor m a tion, but HIPAA requires MORE protection. We have to protect all health information! Notice of Privacy Practices Under HIPAA, patients or clients have a right to know how their health information may be used or disclosed and that they have certain privacy rights. These rights are communicated to patients or clients through a document called Notice of Privacy Practices (NPP). Notice of Privacy Practices allow patients or clients to: Obtain a list of who we have shared their health information with for the past six years Request to amend their medical record Request other communications, such as asking to be notified of lab results only at work and not at home Review and copy their m edical record Request restrictions on the use or sharing of their information, such as opting out of the hospital directory. Before HIPAA, it was not uncommon for patient s or client s private information to be given to other companies for the purpose of marketing products or services. Now, HIPAA states you must get the patient s or client's signed authorization before doing this. Providing for the security of patient or client inform ation With com p u ter s: 17

We have to m ake sure all health inform ation, no m atter where it is, is secure. This includes inform ation stored on com puters. Everyone who uses a computer has a duty to keep health information secure. HIPAA says we must protect all patient or client information on computers by: Properly signing on with individual IDs and passwords; Signing off of com puters if walking away from the desk; Keeping IDs and passwords CONFIDENTIAL; Protecting computer screens from unwanted viewing. Proper Disposal of Information: We have to handle and dispose of patient or client inform ation carefully, such as using a shredder instead of throwing patient or client inform ation away. RULE OF THUMB: NEVER dispose of patient or client inform ation in any open area trash bin. When in doubt, ASK. Reporting violations It is EVERYONE S responsibility to report violations or wrong doings. Whether someone received patient or client information improperly, or shared patient or client inform ation in the wrong way, everyone has a responsibility to report violations. When in doubt... ASK!! Your department supervisor or director is a good place to start for answers to your questions... or for reporting issues. Residents Rights in Long Term Care Residents Rights are guaranteed by the federal 1987 Nursing Home Reform Law. The law requires nursing homes to promote and protect the rights of each resident and places a strong emphasis on individual dignity and selfdetermination. Nursing homes must meet federal residents' rights requirements if they participate in Medicare or Medicaid. Som e states have residents' rights in state law or regulation for nursing hom es, licensed assisted living, adult care hom es, and other board and care facilities. A person living in a long-term care facility m aintains the sam e rights as an individual in the larger com m unity. What are Residents' Rights? 18

Residents' Rights Guarantee Quality of Life. The 1987 Nursing Home Reform Law requires each nursing home to care for its residents in a manner that promotes and enhances the quality of life of each resident, ensuring dignity, choice, and self-determination. All nursing homes are required to provide services and activities to attain or m aintain the highest practicable physical, m ental, and psychosocial well-being of each resident in accordance with a written plan of care that is initially prepared, with participation, to the extent practicable, of the resident, the resident's fam ily, or legal representative." This m eans a resident should not decline in health or well-being as a result of the way a nursing facility provides care. The 1987 Nursing Home Reform Law protects the following rights of nursing home residents: The Right to Be Fully Informed of Available services and the charges for each service Facility rules and regulations, including a written copy of resident rights Address and telephone number of the State Ombudsman and state survey agency State survey reports and the nursing home s plan of correction Advance plans of a change in rooms or roommates Assistance if a sensory impairment exists Residents have a right to receive inform ation in a language they understand (Spanish, Braille, etc.) Right to Com plain Present grievances to staff or any other person, without fear of reprisal and with prom pt efforts by the facility to resolve those grievances To complain to the ombudsman program To file a com plaint with the state survey and certification agency Right to Participate in One's Own Care Receive adequate and appropriate care Be inform ed of all changes in m edical condition Participate in their own assessment, care-planning, treatment, and discharge Refuse medication and treatment Refuse chem ical and physical restraints 19

Review one's medical record Be free from charge for services covered by Medicaid or Medicare Right to Privacy and Confidentiality Private and unrestricted communication with any person of their choice During treatment and care of one's personal needs Regarding m edical, personal, or financial affairs Rights During Transfers and Discharges Rem ain in the nursing facility unless a transfer or discharge: o is necessary to meet the resident s welfare; o is appropriate because the resident s health has improved and s/he no longer requires nursing home care; o is needed to protect the health and safety of other residents or staff; o is required because the resident has failed, after reasonable notice, to pay the facility charge for an item or service provided at the resident s request Receive thirty-day notice of transfer or discharge which includes the reason, effective date, location to which the resident is transferred or discharged, the right to appeal, and the name, address, and telephone number of the state long-term care ombudsman Safe transfer or discharge through sufficient preparation by the nursing home Right to Dignity, Respect, and Freedom To be treated with consideration, respect, and dignity To be free from mental and physical abuse, corporal punishment, involuntary seclusion, and physical and chem ical restraints To self-determ ination Security of possessions Right to Visits By a resident s personal physician and representatives from the state survey agency and ombudsman programs By relatives, friends, and others of the residents' choosing By organizations or individuals providing health, social, legal, or other services Residents have the right to refuse visitors Right to Make Independent Choices 20

Make personal decisions, such as what to wear and how to spend free tim e Reasonable accommodation of one's needs and preferences Choose a physician Participate in com m unity activities, both inside and outside the nursing home Organize and participate in a Resident Council Manage one's own financial affairs Patient Rights in Home Health Care Home health patients and as persons with Medicare have certain guaranteed rights and protections. In addition, federal law specifies that patients of a Med icare-approved home health agency also have the following rights. The home health agency must give patients a copy of their rights. Home Health Care Patients has the rights to: 21

Choose their home health agency. (For members of managed care plans, choices will depend upon which home health agencies your plan works with.) Have their property treated with respect. Be given a copy of their plan of care, and participate in decisions about their care. Have their family or guardian act for them if you are unable. Sou rce: Center for Medicare & Medicaid Services (CMS) Hospice Patients' Bill of Rights Hospice Patients have a right to be notified in writing of their rights and obligations before Hospice care begins. Consistent with state laws, the patient's fam ily or guardian m ay exercise the patient's rights when the patient is unable to do so. Hospice organizations have an obligation to protect and promote the rights of their patients, including the following: Dignity and Respect 22

Patients and their Hospice caregivers have a right to mutual respect and dignity. Caregivers are prohibited from accepting personal gifts and borrowing from patients/ fam ilies/ prim ary caregivers. In addition, patients have the right to: Have relationships with Hospice organizations that are based on honesty and ethical standards of conduct; Be informed of the procedures they can follow to lodge complaints with the Hospice organization about the care that is (or fails to be) furnished and regarding a lack of respect for property (to lodge complaints call the Hospice); Know about the disposition of such complaints; and Voice their grievances without fear of discrim ination or reprisal for having done so. Decision m aking Patients have the right to: Be notified in writing of the care that is to be furnished, the types (disciplines) of caregivers who will furnish the care, and the frequency of the services that are proposed to be furnished; Participate in the planning of the care, be advised of any changes in the care, and be advised that they have the right to do so; Refuse services and be advised of the consequences of refusing care; and Request a change in caregiver without fear of reprisal or discrimination. Privacy Patients have the right to: Confidentiality with regard to inform ation about their health, social, and financial circumstances and about what takes place in the home; and Expect the Hospice organization to release information only as consistent with its internal policy, required by law, or authorized by the client. Financial 23

Patients have the right to: Be in fo r m ed of the extent to which payment may be expected from Medicare, Medicaid or any other payer known to the Hospice organization; Be informed of any charges that will not be covered by Medicare; Be informed of the charges for which the patient may be liable; Receive this inform ation, orally and in writing, within 15 working days of the date the Hospice organization becomes aware of any changes in charges; Have access, on request, to all bills for service received, regardless of whether they are paid out of pocket or by another party; and Be informed of the Hospice's ownership status and its affiliation with any entities to which the patient is referred. Quality of Care Patients have the right to: Receive care of the highest quality; Be admitted by a Hospice organization only if it is assured that all necessary palliative and supportive services will be provided to promote the physical, psychological, social, and spiritual well-being of the dying patient. An organization with less than optimal resources may, however, adm it the patient if a m ore appropriate Hospice organization is not available - but only after fully inform ing the client of its lim itations and the lack of suitable alternative arrangements; and Be told what to do in the case of an emergency. The Hospice organization shall assure that: All m edically related Hospice care is provided in accordance with physician's orders and that a plan of care, which is developed by the patient's physician and the Hospice interdisciplinary group in conjunction with the patient, specifies the services to be provided and their frequency and duration; and All medically related personal care is provided by an appropriately trained home care aide who is supervised by a registered nurse. Patient/ Caregiver Responsibilities 24

The patient/ caregiver has the responsibility to: Show respect and consideration for staff and equipment; Notify the Hospice in advance of any treatment, testing, or medications not provided or arranged by the Hospice; Notify the Hospice of changes in condition (e.g., pain, need for emergency care); Follow the Hospice Plan of Care and work as a Partner with the hospice team in the provision of your care; Notify the Hospice if the visit schedule needs to be changed; Inform the Hospice of the existence of any changes made to advance directives; Provide a safe environment for care to be provided; and Assume responsibility for any charges for which you have been notified of responsibility and/ or incurred for services outside of the Hospice Plan of Care. Source: Hospice Association of America Patient Advocacy Patient advocate is a liaison between patients and healthcare providers (HCPs) in order to improve or maintain high quality of healthcare for the patients. The terms patient advocate and patient advocacy have a broad range of usage and may be applied to the actions of many different individuals and organizations Types of Patient Advocate Lay patient advocate May be a patient himself/ herself who is conscious and reasonably aware of the circumstances or a relative or friend or someone else who is personally concerned about the patient s welfare. 25

Professional individual patient advocate These are individuals, organizations and agencies that offer individual patient advocacy services for a fee. Governmental agencies These are central or state agencies that oversee HCPs. These offices are responsible for certifying and recertifying healthcare professionals and healthcare institutions. They issue reports which can be helpful to patients on all providers within their area of oversight. Long Term Care Ombudsman (LTCO) The program grew out of efforts by both federal and state governments to respond to widely reported concerns that our most frail and vulnerable citizens (those living in long term care facilities) were subject to abuse, neglect and substandard care. These residents also lacked the ability to exercise their rights or voice complaints about their circumstances. The primary purpose of the Long Term Care Ombudsman Program is to identify, investigate and resolve com plaints m ade by or on behalf of residents of long term care facilities. Educating residents, fam ilies, facility staff and the com m unity about long term care issues and services Prom oting and advocating for residents rights Assisting residents in obtaining needed services Working with and supporting fam ily and resident councils Em powering residents and fam ilies to advocate for them selves Patient advocacy within the healthcare community Some hospitals, health insurance companies, and other healthcare organizations em ploy people specifically to assum e this role. Within hospitals, the person may have the title Patient Representative. In the long term care setting the patient advocate may be the social worker Nursing and patient advocacy Advocacy in nursing finds its theoretical basis in nursing ethics. The nurse s prim ary com m itm ent is to the patient, whether an individual, fam ily, group, or community. The nurse has responsibility to promote, advocate for, and strive to protect the health, safety, and rights of the patient. Patient advocacy groups There are the organizations, generally non-profit, that focus on specific diseases or aspects of healthcare. These are sometimes distinguished from 26

Patient Advocates and referred to as Health Advocacy Organizations. The National Patient Advocate Foundation for exam ple is a non-profit organization in the United States dedicated to improving access to, and reimbursement for high-quality healthcare through regulatory and legislative reform at the state and federal levels. The National Patient Advocate Foundation was founded simultaneously with the non-profit Patient Advocate Foundation which provides professional case m anagem ent services to Am ericans with chronic, lifethreatening and debilitating illnesses. Services Patient Advocate can offer Patient advocate can offer many types of services for patients which include the following. Medical assistance They help review diagnoses, treatment options, medical records and test reports, may accompany a patient to appointments, monitor the patient at the bedside in a hospital or be a good choice for a healthcare proxy. Insurance assistance They help to choose the best insurance plan, handling paperwork and insurance filings, negotiating denials of claim s, and Medicare plan decision-m aking. Home health assistance Nursing assistants, home health aides, companions and volunteers may not have any nursing-type training. They can perform services such as in-home nursing care, hom e therapy and rehabilitation, and daily living assistance. Elder and geriatric assistance This type of assistance may also be found in assisted-living and nursing home settings, and m ay provide help with Medicare services or hospice services. Legal assistance Sometimes, the help needed for medical problems is really more legal in natu re. From worker s com pensation to disability filings, to m alpractice and m edical error review, the lawyer is the best advocate. 27

Summary Patients have rights and responsibilities just like any person regardless if the patient is in a hospital, nursing hom e or at hom e receiving m edical services. It is your responsibility to respect the basic rights and personal dignity of all patients. Confidentiality is one of the core duties of all health care workers. It requires health care workers to keep a patient's personal health inform ation private unless consent to release the information is provided by the patient. You must also report any violations of patient s rights or confidentiality to your im m ediate supervisor. 28

References Dorland s illustrated m edical dictionary, 28th ed. (Philadelphia, PA: Elsevier Health Sciences, 1994), s. v. patient care (emphasis added). J. Cohen, N. Kass, and C. Beyrer, Human rights and public health ethics: Responding to the global HIV/AIDS pandemic, in C. Beyrer and H. Pizer (eds.), Public health and human rights: Evidence-based approaches (Baltimore, MD: Johns Hopkins University Press, 2007), p. 368. Potter, Wendell (2009-09-15). "How corporate P.R. works to kill healthcare reform". Salon.com. Retrieved 2014-09-01. 29