Fostering true dignity at the end of life Archdiocese of Toronto Parish Ministry Conference Oct. 19, 2019 William F. Sullivan, MD, CFPC (COE), FCFP, PhD (bioethics) St Michael’s Hospital Academic Family Health Team & Surrey Place Department of Family and Community Medicine, University of Toronto
Key questions • What is distinctive about the Christian notion of human dignity? • What is the role of health, social, and pastoral care providers in supporting people during life’s last phase? • How should we frame the ethics of care during life’s last phase? • What insights does the social teaching of the Church contribute to problematic ethical issues?
Helping to foster true dignity at the end of life “ In the last days of life the dignity of the person should be understood as the right to die with greatest possible serenity, and with that human and Christian dignity which is their due.” New Charter for Health Care Workers (2017)
“human and Christian dignity” intrinsic dignity inestimable worth of every human being as members of the human family who are unique, irreplaceable, and precious to God. Accept death as a part of being human. Neither intentionally terminate life nor prolong dying through excessive means. inflorescent dignity derives from living as best one can, even in the presence of limitations, frailty, dependency, and suffering (John 10.10). Promote conditions for living well while dying.
contrast with “attributed dignity” Reject the claim that a person’s dignity and worth is diminished by the loss of abilities and independence.
Call to evangelize and serve: Catholics promoting true dignity through health, social, and pastoral ministry “The therapeutic ministry of health care workers [including social and pastoral care providers] is a sharing in the pastoral and evangelizing work of the Church. Service to life becomes a ministry of salvation, that is, a message that implements the redeeming love of Christ. Doctors, nurses, other health care workers, and volunteers are called to be the living image of Christ and of his Church in loving the sick and the suffering: witnesses to ‘the gospel of life’.” New Charter for Health Care Workers (2017)
“The poor [and those who are frail and vulnerable] evangelize us and call us to love. In the poor there is a mystery [of frailty and vulnerability] we are all called to live.” Jean Vanier (1988)
Decision making End of life is a phase during which persons and their caregivers might need support to help them link values & goals to decisions regarding care.
Clinical and moral complexity and uncertainties can compound the suffering of persons who are dying and their family caregivers.
What can be helpful are: • Empathetic listening “from the heart” by family, friends, volunteers • Good clinical advice from health care providers • Knowing what the Church teaches or familiarity with resources • Experiences of others • Ethical framework for addressing moral uncertainties and conflicts
Ethics of vulnerability and supports Based on recognition: • Situating the person at the centre of decision making, regardless of their physical and mental state, and level of cognitive abilities and mutuality: • Adapting the types and levels of supports to changing or increasing vulnerabilities • Recognizing that the person has something to contribute
An ethics of vulnerability and supports • Challenges ableism (social attitudes and practices that devalue or limit the capabilities of people with illness and disabilities). • Also challenges an overemphasis on individual autonomy and paternalism.
Vulnerability Must distinguish between: • unavoidable vulnerability (e.g., human frailty) • avoidable vulnerability (e.g., due to physical, environmental, social, and system factors that can be changed).
Vulnerability that is unavoidable • Limitation that come with aging (such as increasing dependency) are part of being human; they do not diminish our intrinsic dignity and worth.
Vulnerability that is avoidable Challenges to adapting to life changes • Inaccessible environments • Social stigma (lack of attributed dignity) • Loneliness and social isolation • Absence of meaning
Supports addressing vulnerabilities Important to: • Discern what vulnerabilities people are struggling with • Recognize that supports might need to change or increase with type and level of vulnerabilities • Not to neglect spiritual support • Avoid abandonment and taking over
Vulnerability at the end of life • Each person’s end -of-life journey is unique. • Conditions for a end-of-life phase can be promoted by palliative care that is holistic. • Resist tendency to over-medicalize end-of-life care (i.e., relying on medical and technical solutions for human issues) • For people of faith, what is ultimate is promoting and supporting an end-of-life phase that is rooted in faith and trust in God.
issues Advance care forgoing accepting planning interventions sedation requests for basic care MAID?
Advance care planning • Fear and denial of death are prevalent, even among Catholics. • Importance of periodic conversations with family, friends, and health care providers (e.g., family physician). • Allow for flexibility, within certain limits, in health care responses to possibly uncertain and changing circumstances.
Advance care planning • Clarify goals and values that should inform end-of-life supports • Clarify what burdens and risks to one’s self and others would be unacceptable. For example, what kinds or levels of treatment and supports would be unacceptable? What if these could not be provided in the person’s home? Would transfer to a hospital be acceptable? Intensive care?
Forgoing medical interventions • Burdens and risks of some interventions can be excessive in relation to possible benefits for the person. • Excessive interventions are ethically optional. • What is “excessive” is specific to goals of persons and their caregivers. • In considering benefits, burdens, and risks, consider the long-term trajectory of decisions, not just the decision at hand (e.g., CPR ICU, discharge home supports, interventions increased burdens of illnesses). • It can be morally justified to withdraw medical interventions that have been started if later they are judged to be excessively burdensome or risky.
Decisions regarding medically-assisted nutrition and hydration (tube feeding) • Associated with human care and community. Normally should be provided. • When feeding by mouth is appropriate and possible, it is preferred. • Discerning benefits relative to burdens and risks to person is still ethically relevant. • Should be aware of changing needs as part of the end-of-life phase.
Accepting sedation • Can be appropriate at any time during serious illnesses. • Duration and intensity should be adapted to the needs of the person. • Sedation to address psychosocial distress might sometimes be appropriate; can be temporary or intermittent. • Importance of considering person and family’s social and spiritual goals.
Requests for assisted suicide and euthanasia (“MAID”) • Unacceptable for Catholics (vs. intrinsic dignity) • There are often issues behind a wish for hastened death that can be addressed in ways other than by MAID • Significance of recognizing and addressing suffering without meaning or hope (spiritual suffering) • Need for assess for vulnerability in decision making and support needs
Catholic social teaching • Promote responsibility for self care, with supports as needed, as part of exercising stewardship of God’s gifts for the sake of serving others. • Care and support for family (subsidiarity = closest to the patient and providers of care). • Challenge death-denying and reductionist attitudes behind trends towards “rescue medicine” and medicalizing death. • Consider the “larger picture” of justly distributing scarce healthcare resources in our world (developed vs. developing nations; acute vs. primary and preventive health care)
Catholic social teaching • Challenge an ethic framing that privileges individual autonomy, complete independence, and control, and which abhors their absence (e.g., vulnerability and those who are vulnerable). • Promote universal access to good palliative care as a matter of justice.
Summary • Explain and defend the Christian notion of human dignity (intrinsic and inflorescent) • In health, social, and pastoral care, support people’s responsibility to live well to carry out their life’s mission (even during life’s last phase) • Frame ethical issues in terms of an ethic of vulnerability and supports • Consider the common good in light of the social teaching of the Church
Thank you. Questions?
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