Comments and suggestions on draft ‘Charter of Patients’ Rights’ by MoHFW

Ministry of Health and Family Welfare (MoHFW) plans to implement 'Charter of Patients Rights'. In this regard a draft document has been developed by National Human Rights Commission (NHRC). The draft has been put up on website (https://mohfw.gov.in/newshighlights/draft-patient-charter-prepared-national-human-rights-commission) on 30th August, 2018 and public opinion has been solicited on the same.

I have sent my suggestions and comments on the draft document which are as follows. Request readers to give feedback on this so that further improvements can be done.

    1.       Right to Information:

The first paragraph of the description given for the right to information states that ‘Every patient has a right to adequate relevant information about the nature, cause of illness, provisional / confirmed diagnosis, proposed investigations and management, and possible complications to be explained at their level of understanding in language known to them’. Following clarification is required in this regard

·      Is the right applicable for patients who are not capable or not in a situation of receiving or understanding the information? For eg. Child patient, mentally unstable patient or patient with altered sensorium.

·      If it is applicable then how to fulfil the same?

·     If in these cases the care-taker of the patient to be informed, then how to address those situations in which patient with above condition is without any designated care-taker. For eg. An accident victim getting treated in a hospital without any care-taker.

The last paragraph of the description under this right, states that caretakers of the patient also have a right to know the identity and professional status of doctors and other healthcare providers.  However, I think some more description shall be provided to clarify following points

·         Who shall be considered as a rightful care-taker of the patient?

·   In case of multiple care-takers (family, relatives etc.) of a patient, should the information be shared with everyone who asks for it, or should they be asked to designate some-one as a primary care-taker?

·     Should an explicit/implicit permission be taken from the patient that information related to his/her healthcare will be shared with the care-taker?

    2.       Right to records and reports:

This right states that ‘Every patient or his caregiver has the right to access originals / copies of case papers, indoor patient records, investigation reports (during period of admission, preferably within 24 hours and after discharge, within 72 hours). Following points must be incorporated and improved in this description,

·         The first statement shall be made gender neutral by stating ‘his/her’.

·         24 hours limit for making records available during period of admission, should be there only if the patient needs a photocopy of his/her records. In case the patient just wants to see the original file, it should be made readily available without any need of giving 24 hours’ time-frame.

·         In case hospital is planning to discard old records of patient, should the patient be informed before that?

·         Reasonable restrictions on care-takers accessing patient’s file shall be stated. If patient refuses the care-taker cannot access the patient’s file.

In the second paragraph the description states that ‘The relatives / caregivers of the patient have a right to get discharge summary or in case of death, death summary along with original copies of investigations.’ It is suggested that following points be incorporated/clarified in this description

                ·         Time frame for issuance of death summary must be stated.

             ·        Who should be a rightful care-taker to whom these documents can be given shall be explained.

               ·         Whether or not hospital/doctor can withhold death/discharge summary, if the full payment is not done?

     3.       Right to Emergency Medical Care

This right mandates provision of basic care without demanding payment/advance. Some suggestions on this are as follows,

·         I think, it is extremely important to define and describe what should be considered as basic care. In absence, of clear understanding on basic care, I fear that many hospitals may provide sub-optimal emergency care to those whom they think may not pay for the emergency care services.

·         It should also be made clear that life saving measures, if required on an emergency basis shall be provided, irrespective of payment, even if such measures incorporates performance of a cost intensive measure such as life-saving surgery or providing ventilator support.

·         A clarification is also required on ‘who determines the emergency’? Is it the patient’s right to determine their condition as emergency and seek emergency care or is it the doctor’s right to assess the patient and decide whether or not the patient be considered as an emergency patient?

    4.       Right to Informed Consent –

This right states that ‘Every patient has a right that informed consent must be sought prior to any potentially hazardous test/treatment (e.g. invasive investigation / surgery / chemotherapy) which carries certain risks’. The description must clarify how this rights shall be fulfilled in following situations

·         Patient unconscious/mentally unstable/children or not in a situation to give consent

·         A potentially hazardous clinical intervention is required on an urgent basis and there is no time to obtain informed consent

    5.       Right to confidentiality, human dignity and privacy

As per my understanding ‘confidentiality’ and ‘privacy’ are two very different things and should be stated as two separate rights. While confidentiality deals with the secrecy of data and information, ‘privacy and human dignity’ is related to behavioural and physical aspects. I also think that many elaborations are required in the description of this right, such as

·         Which data and information shall be kept confidential?

·         Situations where exceptions will be made to the right of confidentiality (such as legal matters, research requirements etc.)

·         Within healthcare organization, who all can have access to patient’s data?

·         Privacy and human dignity needs to be explained (for example, will the act of not informing the patient before touching him/her for  assessment be considered as violation of privacy? An OBG doctor performing PV examination without explicit consent of patient, should it be considered as a privacy and dignity issue?

    6.       Right to non-discrimination

The first paragraph of the description of this right states that ‘Every patient has the right to receive treatment without any discrimination based on his or her illnesses or conditions, including HIV status or other health condition, religion, caste, ethnicity, gender, age, sexual orientation, linguistic or geographical /social origins’. I suggest following basis shall be added in addition to those that are already written

·         Economic status of the patient

·         Category of accommodation in which patient is admitted

·         Affiliations of the patient (For example other patients shall not be neglected when a VIP patient gets admitted in a hospital)

    7.       Right to safety and quality care according to standards

One of the statement in first paragraph of the description states that ‘Patients have a right to receive quality health care according to currently accepted standards, norms and standard guidelines as per National Accreditation Board for Hospitals (NABH) or similar’. I think this should be removed, as majority of NABH standards are not prescriptive in nature. Also, as of today, NABH is being adopted voluntarily and a very small proportion of hospitals in India are NABH accredited. By stating that patient has a right to expect NABH standard level of service from hospital, it may not be realistic.

    8.       Right to choose source for obtaining medicine or test

I suggest a re-thinking on this right. I believe hospitals should be given flexibility to make a policy that a patient in their hospital should take medicine or test from their own pharmacy or laboratory. Otherwise how can a hospital be made accountable for a treatment outcome, if patient is taking medicine or test from another place on which the hospital has no control on.

    9.       Right to take discharge of patient, or receive body of deceased from hospital

I think some more clarity is required in the description. As of now it is stated that a patient cannot be detained in a hospital, on procedural grounds such as dispute in payment of hospital charges. But what in case patient has not paid at all.

Moreover, stating that patient has a right to get discharge irrespective of whether or not he/she settles payment, gives a very different message. In-fact it shall be stated as a responsibility of the patient to settle bills before getting discharged from the hospital.

    10.   Other points to be added

Besides the points stated for each rights there are few more things that needs to be modified in the charter

·         As Advance Directive for Passive Euthanasia has been made legal in India, this should also be incorporated in the patient rights charter

·         The charter must specify the scope such as ‘Who shall be considered as patient’, ‘Which kind of healthcare professionals/providers’ does it applies to’ and ‘What could be some exceptions to the various rights described’

Uniform Care Policy for Hospitals

Healthcare organizations treats patients with different background (such as religion, economic class, literacy level, race, language etc.) and in different settings (such as general ward, sharing room, single room and deluxe room). They are expected to not to discriminate between their patients and provide them a uniform medical care per their clinical requirement. To ensure this, hospitals must have a policy that specifies what constitutes uniform care and what practices must be followed to ensure that patients are not discriminated on the basis of their background or category of their accommodation. The essential part of the policy is provision of uniform medical care and does not applies to those services and facilities that are non-clinical in nature.

End-of-life care: policies and procedures for hospitals

Patients who are in their end stage of life have unique problems. While they suffer with disease symptoms and treatment side-effects they also face psycho-social, cultural and spiritual issues related to the process of dying. The family of a dying patient suffers with grief and needs help in coping with it. The emotions and sensitivities surrounding a dying patient is significantly higher than other patients. These distinctiveness of a dying patient makes it important for hospitals to understand their unique needs and develop policies and practices to fulfill their rights. Following paragraphs explains some of these needs and how can hospitals help in addressing them.

Features of a disabled friendly hospital

A disabled friendly hospital is one which enables people with disabilities to freely and safely move and access facilities within the hospital. Such hospital building provides an environment of independence to individuals with disability, which is their right granted under Persons with disability act, 2016. Patient with a disability is considered as a vulnerable patient and hospitals are required to take care of their safety. Being disabled friendly uplifts the image of a hospital and is also expected by various accreditation agencies.

So what are those features that makes a hospital, ‘disabled friendly’? Well, such hospital building typically accounts for the need of two kinds of disabilities, i.e. loco-motor disability and visual disability. People with loco-motor disability will either be on wheelchair or crutches and which requires a disabled friendly hospital to make its interior easily accessible for wheelchair. People with limited vision will need mechanism to understand ways and areas within the hospital. This is typically achieved by strategically placing tactile floor (guiding block) and using braille, which the visually disabled person can sense.

Here is a list of features that goes into making of a disabled friendly hospital.

Taking Care of Vulnerable Patients

Vulnerable patients are those patients who, for any reason, are not able to protect or take care of himself/herself, against exploitation or harm. Such patients are prone to various risks within the hospital, such as fall, injury, neglect, abuse, medical errors and acquiring of infections. Vulnerability of a patient may be due to his/her age, physical or mental condition. It is the duty of the hospital to identify such patients and provide them with necessary support so that they are safe in the hospital surroundings.

Following type of patients can be identified as vulnerable

      1.       Patients who are old (above 65 or a certain age, as decided by the hospital)

      2.       Patients who are of minor age (Patients below 12 years or as decided by the hospital)

      3.       Patients with physical problems, such as limited mobility, blindness, deafness, speech limitations etc.

      4.       Patients with mental problems, such as depression, mental retardation, forgetfulness etc.

      5.       Patients who are unconscious or in semi-conscious stage

      6.       Patients who are illiterate and have difficulty in understanding written instructions

Passive Euthanasia in India and Making Advance Medical Directives: Details that hospitals and patients must know

Passive Euthanasia has been legal in India since 2011 after Supreme Court issued its judgement in Aruna Shanbaug’s case. Although the plea of the petitioner, Journalist Pinki Virani, was rejected, supreme court gave directives on when and how passive euthanasia can be allowed and executed in Shanbaug’s case, making passive euthanasia as legal in India.

A case on similar line, filed by an NGO ‘Common Cause’ was also going on whose plea was to make it legal for people to make Advance Directive for passive euthanasia. On March 9, 2018 Supreme Court of India upholds passive euthanasia and issued regulations for executing Advance Directive for passive Euthanasia.  The regulation passed through this judgement will remain binding across the country till the time, Parliament of India comes up with a bill or law on this subject.

The hospitals and medical fraternity (specially those that provide end-of-life care) need to make themselves aware about the legally correct way of handling advance medical directives for passive euthanasia. This post explains the legal directives in simple language for its correct implementation. The information presented here is derived directly from the 538-page official judgement report of the Supreme Court of India.
(Check - Advance Medical Directive Form for Passive Euthanasia)

      1.   What is Euthanasia and what is India’s legal stand on it?

Fulfilling patients’ rights in hospital

Patients and their family has certain defined rights which hospitals and medical practitioners need to fulfill. Some of these rights are legally enforceable and a patient can approach consumer court or higher court, if those rights are infringed. Other rights are derived on ethical ground and can affect the image of healthcare provider and its relationship with patient community. Besides legalities, almost all healthcare accreditation programmes gives a lot of importance to protection of patients’ rights and not fulfilling the same may lead to denial of accreditation. While it is important for healthcare providers to fulfill the rights of patients, some of these rights are complex to understand because of the unique and complex scenarios that occurs in healthcare frequently.

This post attempts at simplifying those rights with respects to its scope and intent and guide the healthcare providers on what needs to be done to fulfill them. The rights discussed here have been referred from charter of patients’ rights by consumer guidance society of India, code of ethics regulation by MCI and NABH accreditation standards.

    

General Consent and Informed Consent in Hospitals

General consent is an umbrella consent taken for conducting those patient care processes which do not pose any significant risk of harm to patient. For example, physical examination, collection of blood sample, Intravenous administration of fluids etc. are less risky processes when compared to surgery, anaesthesia etc. and can be done by taking a general consent from patient. The reason it is called as a general consent is because under one consent, the hospital can do multiple patient care processes that are within the scope of general consent. Even though it is called as general consent, it has to be informed to the patient about the scope its scope, before he/she gives consent.

In OPD patients, general consent can be considered as implied for all non-risky OPD based procedures and written consent may not be required. However, in patients being admitted, general consent must be documented with patients’ signature. A standard general consent form can be used for this purpose. The scope can cover consent for…

·    Admitting the patients in an intermediate care ward/room (Scope does not cover admission of patient to ICU for which a separate informed consent should be taken)