Class 7 - End of Life Ethics Flashcards
1982
Criminal Code of Canada is introduced
Suicide is decriminalized
1982:
Charter of Rights and Freedoms signed into Law
1975-1985: Karen Quinlan
**Read story in our google doc
Takeaways from this case:
- Started discussions on the difference between withholding and withdrawal care.
- Court highlights that withdrawal of care can be done ethically based on the patient’s right to privacy (US constitution term, for us a bit different) - right to make decisions free from government or outside interferences. Idea of right to autonomy and right to refuse care. Idea that withholding and withdrawing can both be viewed from this lens.
- Idea that we need to make decision based on patient wishes and what they would want in those circumstances
1990: Nancy Cruzan
24 year old woman who was in a car accident in 1983 and she was thrown from the car
She suffered a cardiac arrest she was unresponsive, like Karen Quinlan, she was stabilized
But she was found having non-oxic brain injury, she was in a persistent vegetative state
Unlike Karen Quinlan she was not ventilator dependent but she required artificial nutrition and hydration to survive
Some of the important things to take away was in this court case, they found that artificial nutrition and hydration should be conceptualized as the same as other form of medical treatments (patients should have the right to consent or to refuse it)
Feeding is considered a medical intervention that requires consent and can be refused
1992: Nancy B v. Hôtel Dieu de Québec
Nancy B suffered from GB syndrome, she was paralyzed from the neck down but unlike Nancy Cruzan and K.Q. she was fully competent , lucid able to make her own decisions
She had been in the state where she was ventilator dependent, she lived in an ICU for two and a half years and she said: “I don’t have quality of life. This is not what I want”
At the time in the civil court of Quebec, recognized that patients have the right to refuse life sustaining treatment. But at the same time, the federal law stated that euthanasia or physician assisted suicide was illegal.
So the question of the hospital: they worried that stopping the ventilator would allowing her to die, it would be equivalent to euthanasia. There’s questions about who had the right to decide and what withdrawing that care would mean…did it mean euthanasia? would they be culpable under the Criminal Court of Canada?
It went to the Quebec Superior Court there was a lot of publicity about this case
Some disability rights Advocates were very concerned about this case, because they they worry that they were framing sort of a life on a ventilator is not worth living. They worried that maybe Nancy hadn’t been given options to have a better quality of life to move out of the ICU to live with events later. That it was stigmatizing sort of a life of disability. Her lawyers said she had been giving these options but that she’s still did not want to live in the state
The Quebec courts then ruled in favor of Nancy B; that competent patients should have the right to refuse treatment. That it honored their autonomy to make decisions about what they wanted in terms of care.
1993: Rodriguez v British Columbia
Sue Rodriguez made a challenge to the Supreme Court to access medical aid in dying, but thr 5-4 majority of Supreme Court justices upheld the status quo
S.R is already dying of arterial lateral sclerosis (lugaric disease - ALS) she asked the Supreme Court the right to die
2013: Cuthbertson v Rasouli
In this pivotal case, the healthcare team felt that continuing life support for Mr. Rasouli with minimal brain function was no longer justifiable. His substitute decision-makers petitioned the supreme court to prevent removal of life support as they did not consent to this. The decision fell in their favor. As noted by Chief Justice Beverley McLachlin in this case, “No legal principle can avoid every ethical
Dilemma”.
The Supreme Court clarifies that this ruling is NOT a decision about who has the ultimate say on life sustaining Tx. The judgment focused on how Ontario Health Care Consent Act is applied.
- BC, Yukon, Manitoba, QB, PEI have similar laws
- The act says that we need consent for treatment
- And today the court ruled that withdrawing life support = treatment
- Thus withdrawing life support = requires consent
2015: Carter v. Canada (Kay Carter and Gloria Taylor change the law)
Gloria Taylor, suffering from ALS, and Kay Carter, with severe spinal stenosis, “challenged the constitutionality of the Criminal Code provisions prohibiting assistance in dying”.
After their death, the Carter family continued the legal process.
Contrary to the Rodriguez case, the courts found that “Insofar as they prohibit physician-assisted dying for competent adults who seek such assistance as a result of a grievous and irremediable medical condition that causes enduring and intolerable suffering, ss. 241(b) and 14 of the Criminal Code deprive these adults of their right to life, liberty and security of the person under s. 7 of the Charter.”
2019: Truchon and Gladu v. Canada and Quebec
Montrealers who challenged assisted dying laws see ruling as ‘ray of hope’
Nicole Gladu and Jean Truchon, the two Montrealers who challenged the country’s assisted dying laws, say a ruling that deemed parts of the legislation too restrictive should be seen as a victory for those who struggle with debilitating conditions.
Quebec Superior Court Justice Christine Baudouin determined provisions in the existing federal and provincial assisted-dying laws that require death to be “reasonably foreseeable” are an infringement on the “life, liberty and security of the person” under the Charter of Rights and Freedoms.
Baudouin gave the federal and provincial governments six months to come up with something new before suspending that provision of the laws.
It also granted an exemption to Gladu and Truchon that allows them to apply for medically assisted death immediately.
2021: Revision to Medical Aid in Dying Legislation
Federal legislation brought into compliance with the Quebec Superior Court ruling that found that it was unconstitutional to prevent people for whom death WAS NOT reasonably foreseeable from access to a medically assisted death
What did Glenda Sandy Discuss when talking about defining ‘family’ and privacy/confidential information in indigenous populations?
Indigenous define family as more than blood related, but she still must advocate for patients to have their personal information and confidentiality respected
no matter the bonds they may share with individuals of their community.
Concept of individualism versus collectivism.
Duties with regards to the code of ethics and confidentiality…But Glenda’s community has expectations of a member of the community = tension can arise.
11 Conditions for a good death
- Relief from physical pain and other physical symptoms
- Effective communication and relationships with healthcare providers
- The performance of cultural, religious or other spiritual rituals
- Relief from emotional distress or other forms of psychological suffering
- Autonomy with regards to treatment and decision making
- Dying in the preferred place
- Life not being prolonged unnecessarily
- Awareness of the deep significance of what is happening
- Emotional support from family and friends
- Not being a burden on anyone
- The right to terminate one’s life
A good death: Challenges
Literature shows people would prefer to die at home - most people die in hospitals in Canada (people want to die in the preferred place)
Relief from physical pain and suffering, performance of rituals, emotional support from family and friends
- in COVID, family presence was restricted
- CHSLDs had a total system failure
what type of ethics do we focus on for end of life nursing?
applied ethics
What are the ethical issues facing nurses providing end of life care?
(3 common ones)
Provision of “futile” care (“Acharnement therapeutique”) - When care has more burdens than benefits
Poor DaNR/LOC discussion
Conflict over goals of care
Ethical considerations:
(using a principilism lens)
beneficence, non-maleficence, autonomy, professional integrity, quality of life, sanctity of life, procedural justice
How have discussions regarding QOL, sanity of life and professional integrity shifted?
Before: pt and families wanted treatment to be withdrawal which made HCP uncomfortable
Now: pt and families ask for Tx to be continued, making HCP uncomfortable
**generally this is what we see
Order of the surrogate decision makers in Qb
Mandatary, tutor or curator
Spouse
Close friend or relative
Futility as will not work
Objective standard
Rare
Treatment will not be physiologically effective in achieving its goal
EX: Dialysis will not work due to hypotension
CPR will not work due to underlying pathology
Futility as not worth doing
More subjective
Involves value judgments
More common
What counts as benefit or success when we talk about treatment?
(Treating team: benefit= survival with return to baseline/meaningful QOL
VS Family: Benefit= survival itself, even if quality of life remains poor)
Applied ethics: Process in the event of disagreement
- Consensus opinion from medical team about what should and should not be offered based on best interest standard.
- Offer psychosocial support to family (spiritual care, SW)
- Ask/for offer second opinion
- Meet on a regular basis
- Can consider limited trial of therapy if appropriate
- Ethics consult
- May offer transfer to another institution
Unhelpful strategies
Delaying conversations about death and dying
Asking questions like:
Do you want us to do everything?
Saying “there is nothing more we can do”
Lacking time and resources to provide proper care
Valuing curative care over quality of life and supporting the dying
Seeing treatment and palliative care as mutually exclusive
Viewing LOC discussions as a one-off discussion
Living in a “death denying” society
Helpful strategies for supporting patients
Practice self-reflection
Be present, LISTEN to patients, be CURIOUS
(These patients are often treated as the lowest priority if on a medical ward)
Informed consent is a PROCESS that takes time
Goals of care discussion should focus on GOALS
Quality end of life care is just as important as curative care
Facilitate partnerships with shared power and shared decision making
Support caregivers and decision makers
Practice self-care
Law 2: An Act Respecting End of Life Care
Bill enacted in 2015
- Every person whose condition requires it has the right to receive end-of-life care, subject to the specific requirements established by this Act.
-
Every institution must offer end-of-life care and ensure that it is provided to the persons requiring it in continuity and complementarity with any other care that is or has been provided to them.
If imminent dying → have right to private hospital room
Law 2: An Act Respecting End of Life Care
Principles
7
respect for persons, understanding, compassion, fairness, dignity, transparency and communication
- Palliative Care
The goal of palliative care is to help patients with serious illnesses feel better and improve or maintain their quality of life.
It prevents or treats symptoms and side effects of disease and treatment. Palliative care also treats emotional, social, practical, and spiritual problems that illness can bring up.
The intention of palliative care is not curative but to help the patient feel as well as they can without seeking to prolong life, nor to hasten death
Everyone can have palliative care, do not need to just be in an onco unit. Can be difficult to give palliative care on a cardio unit for example, which is less equipped for these things.
Alternative therapies: pet, art, massage, music … = holistic way of caring for pt
Multidisciplinary care practice: social worker, therapists, etc.
Non-curative therapy, not meant to prolong life or shorten it, just to comfort.
- Continuous palliative sedation
In some situations, for a person at the end of life with a short prognosis it may be impossible to achieve adequate relief of suffering and pain despite high quality palliative care.
Continuous palliative sedation is the use of sedative medication to relieve suffering by keeping the person unconscious (asleep) until death.
The intention is to relieve suffering (that can’t be relieved in any other way), not hasten death.
The Act contains guidelines on continuous palliative sedation
- Continuous palliative sedation
- who can consent to this
Unlike MAID, family members can consent on behalf of the patients
Make clear that they will be sedated and not wake up again; will not engage with the world
Doctrine of double effect
Performing an act that brings about a good consequence may be morally right even though the good consequence can only be achieved at the risk of a harmful side effect.
To give a patient morphine to ease her pain and suffering which causes the side effect of respiratory depression which subsequently causes her death… the intention is to ease suffering, not to hasten death.
VS
To give a patient a lethal dose of medication to stop their heart from beating because they are suffering, the intention is to hasten death to relieve suffering.
what is MAID and what is the intention?
Medical aid in dying (MAiD) is when a doctor gives medication to a person at their request, to relieve their constant and unbearable suffering by bringing about their death.
The intention is to hasten death in order to relieve suffering
when was MAID legalized and who did it first?
Legalized in the Act in 2015. Has strict criteria and safeguards to protect the vulnerable.
Qc was first province
To be eligible for MAiD patients must:
-Have a Quebec health insurance (a RAMQ card)
Be 18 years old or older
Be able to consent to care ***
- Capacity is very important in MAID
- Does the person understand dx, tx options, prognosis, informed of all other care options (ex: hospice, palliative)
- Need to understand what they understand, what information they have been given
- Sometimes people say MAID but just want a level of D…
Have a grave and irremediable illness
Be in an advanced state of irreversible decline in capability
Be in constant and unbearable physical or psychological suffering that cannot be relieved in a way that the patient finds acceptable
People with solely a mental illness do not qualify (revision March 2024)
does everyone have a right to receive MAID?
NO
people have a right to ask for MAID, not to receive it
Medical aid in Dying recent changes (Bill C11, June 2023)
Qc passed Bill C-11 so it changes the law:
Nurse practitioners can now assess for and administer MAID (December 2023)
A person with a physical handicap experiencing a significant and persistent decline is eligible for MAID (March 2023)
Allows advance medical requests for people at risk of losing capacity in the future due to Alzheimer’s, dementia (no later June 2025 – will not take into effect until 2025)
Some facts about MAID in Quebec
majority of those receiving MAID could be considered end of life
Only 10% have a longer prognosis (> 18 months)
The psychological effects are what lead to most asking for MAID, not things like dyspnea and pain (not wanting to be a burden, not wanting a bad death, not wanting to be depending on toileting)
2 ethical issues surrounding MAID (macro)
Should people with only a mental health condition be eligible for MAID?
Should mature minors be eligible for MAID?
2 ethical issues surrounding MAID (meso)
How do we ensure equitable access to care services?
Should patients requesting MAID get to be prioritized for pain services and psychiatry?
2 ethical issues surrounding MAID (micro)
What if a patient does not want to tell their family?
How should I be? Is it okay if I cry? How do I say goodbye?
Conscientious objection
Healthcare professionals may refuse to participate in the provision of MAiD
because of personal values, or religious or moral beliefs
I do not know what to do, I am busy, I am sad, I am scared = NOT VALID
In the event of conscientious objection, a nurse must:
Continue to treat the patient with respect and compassion
Ensure continuity of care = cannot abandon the pt
Inform the nurse manager as soon as possible = make arrangements for another nurse to be present that day
Advance Medical Directive (AMD)
the means used to document and communicate a person’s preferences regarding life-sustaining treatment in the event that they become incapable of expressing those wishes for themselves.
The tool, the piece of paper
Advance Care Planning
An ongoing process whereby patients, in consultation with health care professionals and loved ones, make decisions about their future healthcare.
Opening up that dialogue
Advance Medical Directives legalities
The AMD form is available on the QC government website.
Completed with a notary or
the form completed and signed in front of 2 witnesses.
The patient can send the form to (1) the RAMQ registry and/or (2) ask that it be included in the medical record (neither is mandatory.)
AMDs can be canceled or changed at any time.
Must be 18 years or over to complete an AMD.
In Quebec, an AMD only applies in 3 situations:
- The person is suffering from a serious and incurable illness and is at the end of life.
- The person is in a coma or is permanently unconscious and there is no chance of regaining consciousness.
- The person is suffering from dementia that severely affects mental functioning and there is no chance of recovery. (e.g. Alzheimer’s, advance dementia)
*AMDs only apply when the patient lacks capacity to consent
In the AMD, patients can consent to or refuse the following FIVE treatments:
cardiopulmonary resuscitation
ventilator assisted breathing or breathing assisted by another device
dialysis treatment
forced or artificial feedings
forced or artificial hydration
What are nurses and physicians role according to the Act about Advance Medical Directives
According to the Act:
Physicians must consult the AMD registry when a patient lacks capacity to consent to care.
Nurses and healthcare professionals (HCP) must:
Provide info on benefits, risks and consequences of care in specific clinical situations and ensure these are understood
Refer to a HCP with more expertise when necessary
When person provides an AMD, ensure they have capacity to consent to care (make sure they are capable at the time they give it to you)
HCP can’t change an AMD, only patients can do so.
Enter AMD in the medical record when provided with one.
ethical issues with AMD (pros)
- promotes autonomy
- reduce conflict
- promotes beneficence and non-maleficence
- minimize burden
ethical issues with AMD (cons)
- too focused on medical interventions
- situations may change
- people change their mind
- can be vague or difficult to interpret
- difficult to predict what we want in the future
