Bioethics Flashcards
What is the problem or challenges with advance care planning for paediatrics?
- lack of info
- bias of beneficence over autonomy (or curative rather than palliative options)
- kids usually outlive parents which leads to avoidance of difficult topics
When is palliative care appropriate to be introduced?
-at any point following the diagnosis of a life-limiting condition
-can introduce simultaneously with potentially curative treatment
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What are the goals of palliative care?
- relief of suffering
- quality of life
- bereavement support
- early discussion avoids equating DNR with giving up
What are key things to remember when discussing palliative care or advance care planning for paediatrics?
- most parents want initiation of discussion
- be specific in terms of interventions
- address physical, psychological and spiritual needs
- be explicit about shift in focus from cure ad survival to comfort and well being
- help parents talk to child about death
What are some barriers to implementation of advance care directives?
- many provinces legal age for advance directives is 16 yrs below this usually advance directives have no legal validity even if made by a mature minors
- legal age to be substitute decision maker varies
- get variable acceptance by third parties about advance directives and lack legal status b/c most not drafted by the patient themselves
What is our role as paediatricians in advance care planning?
- start discussions early and have them regularly (before a crisis)
- our responsibility to start the discussions
- plan regarding emergency and life-sustaining treatments should be well-documented
- palliative care is a potential adjunct to care of all dis with conditions limiting life expectance
- adovcate for uniform legislation across canada
What are some issues with kids participating in medical education (i.e. being examined by medical students)?
- availability of parents
- consent by parents/patients for exams
- need for chaperones
What are the main ethical challenges in medical education?
- truth telling
- informed consent
- respect for person and confidentiality
-medical schools have a responsibility to society to train clinically competent and professional physicians but need to balance this with the right so individual patients (non-maleficence); distributive justice
How do we achieve informed consent for medical education regarding kids?
- by parent or guardian or mature minor is essential for participation of children in medical education
- explicit verbal or written consent
- fully informed of what is proposed and give voluntary, concerned concept
- younger child needs to give assent and dissent and these should be respected
What do families need to know about trainees?
- we need to let them know that trainees may be providing some care for them
- explain the role of a trainee
- they have a right to request no trainee but we need to advise them about the limits of this (esp given trainee involvement during call coverage)
What is the CPS recommendation regarding parental presence during exams of pts?
-they should be present for most encounters unless it is a teen or is clinically urgent
What are the requirements of educational rounds or teaching sessions?
- reveal only relevant non identifying info
- consent not required but should inform the family
- need consent for photographs,
- need written consent if plan to publish photos
What are some implications of having children play SPs for OSCEs?
-should clearly ask for informed consent and assent, as appropriate.
• When children, whether actual patients or volunteer SPs, are being used in an OSCE, they or their parents should provide informed consent and/or assent as appropriate. The well-being and comfort of the child should always be paramount and he/she should have the option to withdraw or be withdrawn from participating in the OSCE. Administrators of OSCEs should always be aware of the impact that portraying a sick or troubled child has on the volunteer child, and should provide appropriate limits and counselling.
• If other SPs are remunerated for their participation in an OSCE, children should also be compensated in a manner that does not constitute undue inducement
Why is research in children a moral duty based on the ethical principles?
- distributive justice: making high-quality health care available to all populations
- beneficence: evidenced based care
- non-maleficence: avoiding harmful therapies
- respect for informed consent: supports developing autonomy in kids
- respect for privacy and confidentiality: within the legal requirements
What have been some challenges in paediatric research?
- protective attitude
- could not recruit enough kids for rare diseases
- not financially beneficial to bring new drug to market for small population
- fewer researchers looking into meds issues
What is the governing document for research in humans in Canada?
Tri-Council policy statement
- must adhere to guidelines
- need REB approval
- assesses risk
- disclosure of conflict of interests
What is the role of the REB and who sits on it?
- multiD panel with scientific peers, bioethics, law experts, lay community
- role to uphold the Tri-council policy statement
- ensure well designed study to ensure reliable and valid results
- ensure researcher has control over the data
What are the 3 main elements required for informed consent for participation in research?
- adequate information
- voluntariness
- capacity to understand the information
-for kids who cannot consent we should seek assent
What are some examples of conflict of interest as it relates to health research?
- financial gains
- personal academic gain/stature within community
- institutional gain of pharm company to drive academic agenda
-conflicts of interest must be disclosed
What do you need to explain to parents about research results?
-offer to give them to them if they want
-make them aware that potentially sensitive info acquired will be documented in the health record
-give other physicians caring for the kid the relevant info you learn from the research
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What are phase 1 trials?
tested in tissue culture/animal/human - focus on establishing safety profile and toxicity information of new drug in patients with advanced disease with no effective treatment
What are phase 2 trials?
-drugs found to be safe, now testing for efficacy, expand toxicity profile (patient with advanced disease)
What is the CPS’ stance on use of anencephalic newborns as organ donors?
- not appropriate organ donors
- need to declare them brain dead or pronounced somatically dead before donation with standard cardiorespiratory criteria can be applied, but difficult to declare these kids brain dead
What is anencephaly?
- CNS abnormality that is characterized by congenital absence of the forebrain, skull and call
- some rudimentary forebrain tissue may exist and a functioning brainstem is usually present
- most die within days or week without life supporting interventions
When can organ donation be considered in anencephalic infants?
- only when it has satisfied the criteria for brain death or somatic death:
- they will not usually satisfy the standard brain death criteria b/c of adequate brainstem function that maintains spontaneous reps and HR after birth
- when brain death has been declared the organs will have undergone ischemic damage making them unsuitable for transplant
- CV and resp functions deteriorate gradually in anencephalic infants before a terminal event
Does life support improve the chance of successful organ donation from anencephalic infants?
- no
- as brainstem function deteriorates, multi system organ failure develops before sudden death
Under what conditions might a parent not be the appropriate substitute decision maker for a child?
- lack capacity
- irresolvable differences between parents
- parents relinquish responsibility
- legal guardian
What do you do in acute situations when there is a question about decision making?
-presumption in favour of life sustaining treatment, if possible to deter treatment then do so to try and get clarification
How do you give kids information about treatment decisions?
- give developmentally appropriate info to understand what is happening to their bodies
- seek assent
- give some appropriate level choices in their treatment
Do we always have a duty to provide life-sustaining care?
- not if there is a consensus of irreversible progression to imminent death, treatment is clearly ineffective/harmful, life severely shortened regardless of Rx and limitation/withdrawal will allow greater palliative/comfort care
- patient will face intolerable suffering/distress that cannot be prevented/alleviated
Are there scenarios where it is appropriate to withhold or withdraw life-sustaining care?
-yes it can be appropriate if it is not clear it will benefit the child (eg. CPR, ventilation, etc); harder with artificial nutrition, etc
Is it ok to use sedatives/analgesics to hasten death?
no it is unethical and illegal
What should you do if you disagree with the parental decision being made related to a treatment decision for their child?
- if there is risk of harm to the child then must provide a referral for 2nd opinion with uninvolved medical consults
- with this level of disagreement, assistance of ethics consultant is recommended
- if not resolved then child protection and/or legal system involvement may be necessary
When is it ok to test children for genetic conditions?
- for better medical care
- to confirm a medical diagnosis
- to enhance medical monitoring
-for genetic conditions that will not present until adulthood (predictive testing) testing should be deferred until the child is competent to decide whether they want that info
Do children need to consent to undergo genetic testing?
-not necessarily but ideally testing should be done when a child is competent
What are some of the concerns around genetic testing?
- could be biased against by insurance companies
- can be positive or negative effects of knowing one’s status
- can feel guilt, cause depression
What are the recommendations around testing kids for carrier status?
-this will be important only for reproductive decision-making so testing should be discouraged until the kid can decide if they want it
What do you do if a family insists on testing a child where there is no benefit to the child?
-MD is not obligated to do the testing if it is not in the best interest of the child
What are the recommendations around genetic testing for infants who are going to be adopted?
should not be subject to genetic testing where there is no timely medical benefit
What are 3 major problems with patient blogs?
- pt’s or care providers are well described which breaches confidentiality
- patient may share info they they may not realize is sensitive
- HCP may be offended by pt comments and that may impact care
How should physicians approach websites?
- avoid recommending therapies or meds in a public forum as they may be perceived as advertising, conflict of interests should be disclosed
- must be kept up to date and respond to questions in a timely fashion
- may be time-consuming, interfere with office care
What are the biggest issues with social networking sites?
- users cannot fully control who has access to their profile
- issues of civil liability relating to breaches of pt confidentiality
- posting of unprofessional content
- jo loss b/c of damaging disclosure by a profiled individual or 3rd party
- physicians have not always applied appropriate privacy options
What are the CPS recommendations regarding social media and blog use?
• Protecting patient confidentiality and privacy by:
◦ Not posting identifiable patient information online
◦ Not accessing a patient’s blog without their permission
◦ Exercising caution because ulterior motives, personal justifications and hidden agendas may be less evident online than when communicating in person.
• Preserving physician privacy by:
◦ Use high privacy settings and understand this does not completely protect
◦ Avoid online friendships with patients
◦ Keep business and personal websites separate
◦ Use same ethical and professional principles online as in person (i.e. avoid risky material and inappropriate communications)
◦ Use only accurate, current and evidence based information
◦ Not promoting any therapy for personal gain.
What do you need to keep in mind regarding electronic consults?
- keep professional, ethical and legal duties
- confidentiality is paramount
- use clear patient identifiers but be cognizant of the security of our email network
- remember that written email record may be viewed as a formal consult even though it is not
What are the problems with electronic discussion groups?
- often anecdotal, include personal observations or clinical intuitions
- not peer-reviewed
- adice should be limited to general comments about a disease, treatment modality or recent research if you have not seen the patient, consider including a disclaimer
What are recommendations around emailing patients?
- if wrong advice is given it may erode trust and result in litigation
- should be reserved for simple, non-urgent issues for previously diagnosed conditions and not involve sensitive or confidential information
- • Review your current licensing body policies including liability insurance provider on email
How should you communicate with individuals who seek medical advice who are not your patients?
do not advise them if they are not your patients
When is artificial nutrition and hydration beneficial?
- if will enhance quality of life and health (e.g. malabosption, increased caloric requirements)
- should not be done with the sole purpose of prolonging survival,
- if artificial nutrition is not improving health or QoL it should be re-evaluated
Is there a difference between withholding and withdrawing artificial nutrition or other life-sustaining therapies?
no, important to recognize that life-sustaining treatments do not cure/change the course of the underlying disease
What are some common objections from families regarding forgoing artificial nutrition and hydration?
- often seen as ‘food and drink’ and not a medical intervention
- they may see it more as providing care/compassion compared to things like vents
What are some examples of when it is morally permissible to withhold or withdraw artificial nutrient and hydration?
- child who permanently lacks awareness and ability to interact with environment (e.g. anencephaly, persistent vegetative state)
- if it only prolongs and adds morbidity to the process of dying (e.g. terminal illness in the final stages of dying)
What are some important things to ensure with families when withholding artificial hydration and nutrition?
- shared decision making with parents fully involved
- reassure them that the kid will be kept comfortable
- comprehensive palliative care measures including appropriate sedation, treatment of pan or dyspnea, oral hygiene, swabs for dry mouth etc
- attention to psychosocial cues is important as it may be weeks before the child dies and do not want parents to feel abandoned
- ethics involvement if things get controversial
What can you do if a member of the health care team has personal objections to withdrawal of artificial hydration and nutrition?
- helpful to request external legal or ethics consultation
- arrange for team conferences to clarify misconceptions and openly discuss difference of opinion
- individual providers can recuse themselves so that plan can be followed in accordance to child/family wishes
