Patients' rights

India

Under the direction of the Ministry of Health and Family Welfare (MOHFW), India's National Human Rights Commission drafted a Charter of Patients' Rights in 2018. Following a recommendation by the National Council of Clinical Establishments, MOHFW submitted the draft in the public domain for comments and suggestions on August 2018.[1]

The Charter draws upon different provisions relevant to patients' rights that were previously scattered across the Constitution of India, the Drugs and Cosmetic Act of 1940, the Clinical Establishment Act of 2010, and various judgments by the Supreme Court of India, among other sources. The Charter aims to:

  1. provide a reference for State Governments to enact or modify existing regulation.
  2. provide a framework of healthcare standards for service providers.
  3. And, raise awareness among patients about their rights.[2]

The charter by NABH is available on public domain at Patient_Charter-DMAI_NABH.

Recognized patients' rights

The Charter of Patients' Rights lists seventeen rights that patients are entitled to:[3]

Right to information: Every patient has the right to know what is the illness that they are suffering, its causes, the status of the diagnosis (provisional or confirmed), expected costs of treatment. Furthermore, service providers should communicate this in a manner that is understandable for the patient.
Right to records and reports: The patient has the right to access his/her medical records and investigation reports. Service providers should make these available upon the patients' payment of any photocopy fees as applicable.

Right to emergency care: Public and private hospitals have an obligation to provide emergency medical care regardless of the patients' capacity to pay for the services.

Right to informed consent: Patients have the right to be asked for their informed consent before submitting to potentially hazardous treatment. Physicians should clearly explain the risks from receiving the treatment and only administer the treatment after getting explicit written consent from the patient.

Right to confidentiality, human dignity and privacy: Doctors should observe strict confidentiality of a patient's condition, with the only exception of potential threats to public health. In case of a physical inspection by a male doctor on a female patient, the latter has the right to have a female person present throughout the procedure. Hospitals also have an obligation to secure patient information from any external threats.

Right to second opinion: Patients are entitled to seek a second opinion and hospitals should facilitate any information or records that the patient requires to do so.

Right to transparency in rates, and care according to prescribed rates wherever relevant: Hospitals should display the rates that they charge in a visible manner and patients should receive an itemized bill when payment is required. Essential medicines, devices and implants should comply with rates established by the National Pharmaceutical Pricing Authority (NPPA).

Right to non-discrimination: Service providers cannot deny treatment on the basis of gender, caste, religion, age, sexual orientation or social origins. Additionally, it is against the Charter to deny treatment on the basis of a patients' health condition, including HIV status.

Right to safety and quality care according to standards: Hospitals must ensure a hygienic and sanitized environment to provide their services.

Right to choose alternative treatment options if available: Patients have the right to consider treatment alternatives and even refuse treatment.

Right to choose source for obtaining medicines or tests: Any registered pharmacy and laboratory is eligible to provide patients with goods and services they require.

Right to proper referral and transfer, which is free from perverse commercial influences: In case of transfers or referrals, the patient has the right to an explanation that justifies the transfer, as well as confirmation from the hospital receiving the patient about their acceptance of the transfer.

Right to protection for patients involved in clinical trials: Clinical trials should comply with all the standards and protocols under the Directorate General of Health Services.

Right to protection of participants involved in biomedical and health research: Studies involving patients should follow the National Ethical Guidelines for Biomedical and Health Research Involving Human Participants.

Right to take discharge of patient, or receive body of deceased from hospital: Patients have the right to be discharged and may not be detained at a health service provider facility because of procedural reasons such as payment disputes.

Right to Patient Education: In addition to information about their condition, patients have the right to know about public health services such as insurance schemes and charitable hospitals.

Right to be heard and seek redressal: Patients have the right to provide feedback and comments to their health service providers and file complaints as required. They additionally have the right to redressal in cases where any of their rights are violated.

United Kingdom

In the UK, the Patient's Charter was introduced and revised in the 1990s. It was replaced by the NHS Constitution for England in 2013.

United States

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.

Bill of 2001
A rally for the patients' bill of rights proposed in 2001, with Bill Clinton, Joe Hoeffel, Ron Klink, Ed Rendell, and Chaka Fattah.

The United States Congress considered a bill designed to safeguard patients' rights in 2001. The "Bipartisan Patient Protection Act" (S.1052), sponsored by Senators Edward Kennedy and John McCain, contained new rules for what health maintenance organizations had to cover and granted new rights for patients to sue in state or federal courts, if they are denied needed care.[4]

The House of Representatives and Senate passed differing versions of the proposed law. Although both bills would have provided patients key rights, such as prompt access to emergency care and medical specialists, only the Senate-passed measure would provide patients with adequate means to enforce their rights. The Senate's proposal would have conferred a broad array of rights on patients. It would have ensured that patients with health care plans had the right to:

  • have their medical decisions made by a doctor;
  • see a medical specialist;
  • go to the closest emergency room;

The bill was passed by the US Senate by a vote of 59–36 in 2001,[5] it was then amended by the House of Representatives and returned to the Senate. However, it ultimately failed.

Industry resistance

Wendell Potter, former senior executive[6] at Cigna turned whistleblower, has written that the insurance industry has worked to kill "any reform that might interfere with insurers' ability to increase profits" by engaging in extensive and well-funded, anti-reform campaigns. The industry, however, "goes to great lengths to keep its involvement in these campaigns hidden from public view," including the use of "front groups." Indeed, in a successful 1998 effort to kill the Patient Bill of Rights then,

“the insurers formed a front group called the Health Benefits Coalition to kill efforts to pass a Patients Bill of Rights. While it was billed as a broad-based business coalition that was led by the National Federation of Independent Business and included the U.S. Chamber of Commerce, the Health Benefits Coalition in reality got the lion’s share of its funding and guidance from the big insurance companies and their trade associations. Like most front groups, the Health Benefits Coalition was set up and run out of one of Washington’s biggest P.R. firms. The P.R. firm provided all the staff work for the Coalition. The tactics worked. Industry allies in Congress made sure the Patients’ Bill of Rights would not become law.”[7]

AAPS proposal

Some have cited differences between positive rights and personal freedoms. Asserting that medical care "must be rendered under conditions that are acceptable to both patient and physician," the Association of American Physicians and Surgeons (AAPS) adopted a list of patient freedoms in 1990, which was modified and adopted as a 'Patients' Bill of Rights' in 1995:[8]

The text of the AAPS Patients' Bill of Rights reads:

"All patients should be guaranteed the following freedoms:

  • To seek consultation with the physician(s) of their choice;
  • To contract with their physician(s) on mutually agreeable terms;
  • To be treated confidentially, with access to their records limited to those involved in their care or designated by the patient;
  • To use their own resources to purchase the care of their choice;
  • To refuse medical treatment even if it is recommended by their physician(s);
  • To be informed about their medical condition, the risks and benefits of treatment and appropriate alternatives;
  • To refuse third-party interference in their medical care, and to be confident that their actions in seeking or declining medical care will not result in third-party-imposed penalties for patients or physicians;
  • To receive full disclosure of their insurance plan in plain language, including:
  1. CONTRACTS: A copy of the contract between the physician and health care plan, and between the patient or employer and the plan;
  2. INCENTIVES: Whether participating physicians are offered financial incentives to reduce treatment or ration care;
  3. COST: The full cost of the plan, including copayments, coinsurance, and deductibles;
  4. COVERAGE: Benefits covered and excluded, including availability and location of 24-hour emergency care;
  5. QUALIFICATIONS: A roster and qualifications of participating physicians;
  6. APPROVAL PROCEDURES: Authorization procedures for services, whether doctors need approval of a committee or any other individual, and who decides what is medically necessary;
  7. REFERRALS: Procedures for consulting a specialist, and who must authorize the referral;
  8. APPEALS: Grievance procedures for claim or treatment denials;
  9. GAG RULE: Whether physicians are subject to a gag rule, preventing criticism of the plan."
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See also

References
  1. "Charter to uphold patients' rights". www.telegraphindia.com. Retrieved 2019-01-19.
  2. The Clinical Establishments (Registration and Regulation) ACT, 2010 (2018). "Charter of Patients' Rights for adoption by NHRC" (PDF). The Clinical Establishments (Registration and Regulation) ACT, 2010.
  3. "Placing the draft of "Charter of Patients' Rights" in public domain for comments/ suggestions- reg" (PDF). India. Ministry of Health and Family Welfare. August 30, 2018. Archived from the original (PDF) on January 19, 2019. Retrieved January 19, 2019.
  4. Dubno, Dan (June 18, 2001). "Bipartisan Patients' Bill Of Rights Act". CBS News. Retrieved 6 July 2020.
  5. "Senate Vote #220 in 2001. S. 1052 (107th): Bipartisan Patient Protection Act". GovTrack. Retrieved 3 September 2016.
  6. "How Insurance Companies Hurt Policyholders - ABC News". Abcnews.go.com. 2009-06-24. Retrieved 2012-08-01.
  7. Potter, Wendell (2009-09-15). "How corporate P.R. works to kill healthcare reform". Salon.com. Retrieved 2012-08-01.
  8. "Patients' Bill of Rights". www.aapsonline.org. Retrieved 2018-12-03.
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