End of Life Ethics Presentation

End of Life Ethics Presentation

• Presentation date: October 11, 2024
• Presenters: Justine Gauthier (Nurse Clinician, Neuro-Palliative Care Program), Veronique (Nicky) Fraser (Advance Practice Nurse, MAID)
• Presentation topic: End of Life Ethics

Land Acknowledgement

• McGill University is located on unceded territory of the Kanien'kehà:ka (Mohawk)
• The Kanien'kehà:ka are the traditional custodians of the lands and waters
• This acknowledgement is a small gesture that must be part of ongoing work to challenge legacies of colonialism

Disclaimer

• Opinions expressed in the presentation are those of Veronique Fraser and do not represent the Quebec Commission on End of Life Care
• Reading (take back) points:
  • Do not let assumptions impact care
  • Listen, show curiosity, learn from narrative and relational ethics
  • Quality of life is dynamic and broad
  • Avoid moral disengagement

Objectives

• Understand Quebec's end-of-life care legislation (Act Respecting End of Life Care 2015)
• Appreciate common ethical issues in end-of-life nursing care
• Identify and address ethical issues in palliative and end-of-life care, using ethical principles and reasoning
• Understand the importance of self-reflection, awareness of personal beliefs, attitudes and values to provide optimal care.

Overview: Case Studies

• Balancing acts: resource allocation and end-of-life care
• The ethics of palliative sedation
• Caring and conflict: when help feels harmful
• Ethics considerations for eating and drinking
• Ethics of medical aid in dying
• Ethics of treatment refusal

Case 1: Balancing acts

• Resource allocation and end-of-life care

What is a good death?

• A systematic review identified 11 conditions for a good death experienced in western countries:
• Relief from pain and other physical symptoms
• Effective communication and relationships
• Performance of cultural/religious/spiritual rituals
• Relief from psychological/emotional distress
• Autonomy
• Dying in a preferred place
• Avoiding unnecessary prolongation of life
• Awareness of the situation
• Emotional support from family/friends
• Not being a burden on others
• The right to terminate one's life

Act Respecting End of Life Care (2015)

• Every person whose condition requires it has the right to receive end-of-life care, subject to the Act's requirements
• Every institution must offer end-of-life care, ensuring continuity and complementarity with other care.

Law 2: An Act Respecting End of Life Care (2015)

• The Act covers palliative care, palliative sedation, medical aid in dying (MAID), and advance directives.

Macro-level Challenges

• Estimated 40 million people requiring palliative care (80% in low/middle-income countries)
• Globally, only about 14% currently receive this care.
• Inequities exist, with lower-income countries consuming a smaller percentage of the world's morphine for pain management.

Meso-level Challenges

• People prefer to die at home
• Caregivers face physical burdens, chronic fatigue, social burdens, and income loss
• Access to home palliative care services is limited
• Women spend more time on unpaid care-giving than men, which is often undervalued and under-recognized work.

Micro-level Challenges

• Nursing shortages impact palliative care provision.
• Example patient cases are included (Susie, Jerimiah, Mavis, Elvira). Prioritization of care needs must be decided.

Micro-level challenges (continued)

• Nursing priorities often prioritize curative/life-prolonging care, while palliative care is often placed lower on the priority list.
• Emphasis often on medical crisis and life-prolonging treatment rather than patient/family focused care.
• Emotional distancing by medical/nursing staff from dying patients.

Case study 2 (continued)

• Mrs. Smith, 57, has advanced oesophageal cancer.
• She is experiencing severe breathlessness/difficulty breathing; respiratory rate is 6/min, shallow.
• Her extremities are cold and mottled.
• Family is present at her bedside.
• Clinician experienced apprehension in providing appropriate palliative care, including medication dosages (morphine, and lorazepam) due to concern of hastening death.

Case study 2 (continued)

• After debriefing, you decided to proceed with medication as prescribed.
• On the following rounds you find Mrs. Smith not breathing and pulseless.
• You feel responsible despite knowing the medication wasn't directly the cause of death.
• Family grateful for the care provided, and grieving healthily.

Reflection questions case study 2

• Frame the ethical issue
• Biggest concerns in the situation
• Additional information needed
• Is palliative sedation similar to physician-assisted suicide?

Doctrine of Double Effect

• Performing an action with a good consequence is morally permissible even if achieving that good consequence carries a risk of negative side effect.
• Giving morphine for pain relief may hasten death but this is a side effect, not the intent.
• Giving a lethal dose of medication to stop a heart is hastening death.

Remember ethical decision-making models.

• Using models (e.g., IDEAs) in navigating ethical scenarios

Does palliative sedation shorten survival?

• No significant difference in survival between those receiving or not receiving sedation.

Case 3: Caring and conflict

• Elena, 79yo with inoperable glioblastoma
• Treatment team recommends palliative care
• Husband, Lorenzo, insists on active (curative) treatment.
• Concerns arise regarding conflict over goals of care at the end of life, life worth living, balancing patient autonomy, beneficence, and professional integrity, and who decides.

Reflection questions Case 3

• Ethical issue framing in the scenario
• Biggest concerns in the situation
• Further information needed
• Negotiating issues in conflict between family members and the treating team.

How did we get here?

• History of legal and ethical cases surrounding withdrawing treatments, including Quinlan case, Cruzan case, and Nancy B case to understand the evolution of ethical considerations on end-of-life care.

Rasouli Case

• Hasan Rasouli presented with a medical condition (brain tumor) where physicians deemed treatment futile to ensure quality of life.
• His wife refused withdrawing life support.
• The case went to court and raised considerations over patient-specific values in regards to end-of-life treatment.
• Importance of legal precedent and community values.

Supreme Court Case

• The Supreme Court maintained the status quo by indicating a process involving the Consent and Capacity Board to manage disagreements
• Case did not change the current situation with regards to the ability to withdraw and/or withhold life support for patients.

Case 3: Ethical Considerations from Disagreement

• Procedures for addressing disagreements: What the treatment team must do for patient with disagreement over goals of care at the end of life, including additional considerations in regards to best interest for patients, sound ethical decision making strategies, and consensus opinions from the medical team on appropriate support provided to families.

Applied Ethics: Process in the Event of Disagreement

• Consensus opinion on appropriate care, offering support and second opinions, considering limited trials, ethics consultation, and seeking possible transfers.

Practical strategies for facing ethical dilemmas

• Carefully considering presented facts
• Backing off to have better communication
• Facilitating dialogues to ensure better understanding
• Discussing situations with patients and family
• Team collaboration
• Ethics consultation
• Self-awareness
• Importance of spontaneous response

Cases 4 and 5: Ethical Food for Thought

• Discussing and debating the ethical implications regarding eating and drinking.
• Paula, 90yo with advanced Alzheimer's, no longer eats but is non-verbal
• 74yo male with malignant brain tumor; family and care team disagree on the level of treatment needed.

Case 6: The Ethics of Medical Aid in Dying (MAID)

• Understanding and discussing principles of MAID (Medical Aid in Dying), including defining features, distinguishing characteristics, and eligibility criteria in the context of end-of-life care.

What MAID is Not

• Distinguishing MAID, from life-sustaining treatment withdrawal, palliative sedation, and continuous palliative sedation. Differences in intent (cause of death).

Ethical and Legal Considerations for End-of-Life Decisions

• Overview of ethical and legal aspects of withholding/withdrawing treatments, palliative care, continuous palliative sedation, and MAID. Important consideration of differences in intentions for each stage of care.

MAID Eligibility Criteria

• Criteria for medical aid in dying (MAID) are defined, outlined.

Statistics in Quebec

• MAID in Quebec is a growing trend showing high numbers in relation to total deaths. (Data are presented in the form of statistics and a timeline)

Ethics issues surrounding MAID in Quebec and Canada

The ethical issues surrounding MAID in Quebec & Canada, including the implications of existing or possible future laws, are addressed. Ethical concerns regarding the use of MAID for mental illness, and suggestions for the appropriate use and safeguards of MAID in Canada, as well as possible future requests for consideration. The need for appropriate safeguards and considerations of various stakeholders (patients, family members, physicians) for MAID are outlined.

Advance Medical Directives

• Details and overview of Advance Medical Directives, their application, content, completion/access, cancellation, and the role that healthcare professionals play in their facilitation.

Advanced Medical Directives (continued)

• Procedures and considerations regarding advance care planning and its role in advance medical directives

Some Helpful Questions

• Questions designed to support further discussion around end-of-life decisions.

Case Study 7: Ethics of Treatment Refusal

• Lisa, 35 yo with chronic conditions, is in a coma and unable to speak.
• Family disagrees with the approach of the care team for feeding Lisa, triggering a conflict.
• The care team feels the family is starving her, prompting a call for an ethics consult.

Reflection questions case study 7

• Ethical issue framing in the scenario
• Biggest concerns
• Additional information needed
• Ethical considerations regarding family members refusing life-sustaining treatment for the patient. (circumstances)
• The role of advance medical directives.

Advance Medical Directives (additional considerations)

• Summary of advance medical directives (AMD) and regulations surrounding them
• Further information regarding implementation and use.
• Resources for advance care planning
• Important considerations when using AMDs: vague interpretations, capacity for change, focus on medical intervention versus personal values, predicting future wishes

Advanced Medical Directives (con't)

• Provides practical details on how AMDs are handled in Quebec including who can make the decisions(who is authorized).

Advance Medical Directives (cont'd, page numbers 99.100, 101, 102)

• In Quebec, AMDs only apply in specific situations (serious illness, coma, severe dementia).
• Patients can consent to/refuse specific treatments outlined in the AMD.
• Physicians must consult the AMD registry when a patient lacks capacity.
• Nurses/HCPs have roles regarding AMDs to communicate benefits/risks involved, ensure patient/family understanding, and to keep the document in the medical record.
• The presentation outlines some pros and cons when using AMDs (including: vagueness, changes of mind).

Some helpful questions

• Questions directed toward patients to encourage discussion and awareness regarding their own healthcare choices.

This presentation features insights on end-of-life ethics from experts in neuro-palliative care and MAID. Learn about Quebec's end-of-life care legislation, the importance of narrative and relational ethics, and strategies to improve patient care. Engage with concepts that challenge traditional views on quality of life in palliative settings.