Ask the Professional.

Maureen Carpenter, BSC, RN, CD provides her insight

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1) What are the fundamental rights patients should be aware of when receiving treatment for chronic conditions like Myeloproliferative Neoplasms?

In Canada, the Patient’s Bill of Rights (excellent comparative overview online)ensuresthatallpatientshaverightstocleanandsafecare environments, the right to be treated with dignity and respect, the right to protection of privacy, the right to independence and self-determination, the right to high-quality services that comply with health standards, the right to have all relevant information to ensure they can make informed decisions about their care, the right to participate in their care and in doing that they will have a voice, the right to decline student involvement in your care, the right to recognition of an Advance Care Directive, the right to a second opinion, the right to pain and symptom control/ management, the right to refuse medication or treatment BUT no legislation gives a patient the right to demand a medication or treatment, and finally, the right to MAID (MedicalAssistanceinDying).

2) How can patients effectively advocate for themselves within the healthcare system to ensuretheyreceivethebestcare?

Each province will have Health Information Act publications with many allowances for access to a patient’s health information and correcting any errors. Education is the key to knowledge, and a patient who is informed about their condition, treatment(s), and rights will be the best advocateforthemselves.

A patient may appoint a substitute decision-maker. You have the right to appoint a substitute decision-maker (SDM) who will represent you if or when you can no longer make your own medicaldecisionstoadvocatewhenthepatientcannot.

3) What resources are available for patients and caregivers to understand and navigate their healthcarerightsandresponsibilities?Otherthanspecificprovincialhealthpublications.

Foremost Charter of Rights and Freedoms- this document does not expressly guarantee rights to healthcare or a right to access healthcare. What the Charter does do is protect health related valuesandaccesstomedicallynecessaryservices.

Secondly Patient’s Bill of Rights- this document expresses the truth that patients are people whopossessthesamefundamentalhumanrightsextendedtoallCanadians.

Thirdly Public Health Act in Canada- this document addresses the duties of the Chief Medical Officer of Health, deputy and medical officers of health; outlines the responsibilities of regional health authorities; deals with the treatment of communicable diseases; addresses epidemics; anddealswithpublichealthemergencies.

Lastly Government of Canda Health Act which is mainly about insurance, insured services, interprovincial travel healthcare coverage, etc, to ensure access to health services without financialorotherbarriers.

4) What are a patient’s responsibilities when receiving healthcare services?

Treatstaffwiththecourtesyandrespecttheywishtoreceiveback. Be an active participant in the development and implementation of their care/treatmentplan.

Keep your care team informed of changes to or developments in your healthstatusandsupportservices. Also,keepcareteamawareofaddressorcontactinformationchanges. Be available for treatments, don’t miss appointments if possible. If missing an appointment is unavoidable ensure that your team is aware in advance, if possible, that an appointment or treatment cannot be attended.

5) What steps can patients take if they feel their rights are being violated or their healthcare teamdoesnotaddresstheirconcerns?

Examplesofrightsviolationscouldbe:

· Inadequate disclosure of risks, benefits, and alternatives associated with medical procedures ortreatments.

·Performingprocedureswithoutsecuringthepatient’sinformedconsent.

· Incorrectly diagnosing or delaying the diagnosis of medical conditions, leading to worsened prognosis.

·Neglectingtorecognizeandaddressobvioussymptoms.

·Administeringincorrectmedicationsordosages.

·Overlookingapatient’sallergiesorpotentialdruginteractions.

·Conductingthewrongsurgeryoroperatingonthewrongbodypart.

·Leavingsurgicalinstrumentsorforeignobjectsinsidepatients.

·Departingfromestablishedmedicalprotocolsandcarestandardswithoutjustification.

·Unauthorizeddisclosureofapatient’smedicalinformation.

·Inadequatemonitoringofapatient’scondition.

·Failingtofollowupontestresultsorensureappropriatepost-operativecare.

·Breachingpatientprivacybydiscussingsensitiveinformationwithoutconsent.

Violation of patient rights would be a legal issue requiring the expertise of a medical malpracticelawyer.OtheravenueswouldHumanRightsTribunalswithinhomeprovince.