End-of-life care is a confusing area for many people. Because the topic is sensitive or seems far in the future, people spend little time considering how end-of-life issues should be handled ethically. We talked with our columnist, attorney Jason Negri, about how to navigate this challenging part of life – and death.
In your work, you see how people tackle life’s most challenging ethical questions – life and death. How do you approach these sensitive topics? Most of us go about our daily business without any thought to our own mortality, but these sensitive topics are entirely appropriate within the context of estate planning, so the conversation isn’t as awkward as you might think. I approach the particular issue of end-of-life medical care by asking questions that encourage my clients to go a little bit deeper than the usual knee-jerk reaction of “I don’t want to be kept alive by tubes.” I ask them to reflect upon thought-provoking statements regarding end-of-life care like the idea of burdensome medical treatment, organ donation, artificial nutrition and hydration, etc. In our follow-up conversations, we discuss these topics at length.
In the end, it is my client’s decision how he or she wants the personal documents to read and what care is or is not wanted. These questions are meant to inspire some thoughtful reflection about issues possibly never considered.
How do people tackle ethics differently? All the issues I deal with are questions of competing goods – the efficacy of a proposed treatment versus the burden that treatment would impose; the good of self-determination versus the good of respecting life. Everyone seeks what they believe to be good, but may not have the knowledge or the tools to assess the ethics involved. I try to help them see the ethical dimensions of the issues.
What is the difference in how someone with faith tackles an ethical question vs. someone without faith? People of faith have their ethical decisions influenced by that faith. If you believe in the Gospel of Life and the life-affirming principles it espouses, you’re going to see human life as having more than mere utilitarian value. Not that we must do everything possible to sustain life – there comes a time when most people acknowledge “enough treatment is enough” – but for those of us whose faith informs our ethics, we’re going to respect human life as a good in itself and make our decisions accordingly.
How do you help clients deal with planning living wills? How do you help them understand all the moral issues related to determining their end-of-life instructions? It’s interesting, because Michigan actually does not recognize the living will. This very fact allows me to discuss the dangers inherent in those types of documents, because a living will is not a good option. Too much authority is given to the attending physician rather than those who know the person best. A living will suggests a person can predict beforehand what he or she wants done if they are in a particular condition, and it is subject to interpretation and second-guessing.
However, like most estate planning attorneys, I do have a “guidelines” section in my durable power-of-attorney for health-care document that discusses the removal of medical care. The decision to remove medical treatment deemed burdensome or futile rests with each individual making that decision, or with his designated agent if he is unable to participate in his own decisions. I hope speaking with me will not only help my clients indicate their desires in their documents, but will prompt them to have that all-important conversation with their agent and their loved ones about their wishes.
How does your faith sustain you in your work? My faith informs what I do, both in the substance of my work with end-of-life medical ethics, but also in terms of my own integrity. I make sure I charge reasonable rates, I don’t over bill, even when I know I could get away with it, and I will refuse clients if I need to. I have an overriding sense of service to my clients, to the justice system and to my family. It’s my job to reconcile these separate areas, and serve my clients’ interests and needs without compromising my own standards of integrity.
In particular, I think my faith is an encouragement for me to share what I know regarding ethical standards for end of life medical treatment. I work with my clients to share my knowledge of ethics, and hope they consider the information shared as they make their decision.
Tell us about your work with the Patients Rights Council – how are you working to expand Catholic moral teaching into the public sector? The Patients Rights Council is a nonsectarian organization. It happens that our position is shared by many faiths, including the Catholic Church. So without referencing God or religious dogma, we are educating people about the issues involved in making these decisions, and working toward a society that protects those who are elderly, those who have disabilities, and those who are medically vulnerable. It’s a different way of serving the poor and marginalized, as well as affirming the dignity of human life, both of which are intrinsic to Catholic moral teaching.
For more information on the ethical questions involved in estate planning, visit Jason Negri’s website at www.jasonnegri.com.
Catholic teaching on end-of-life issues can be explored further at www.tinyurl.com/USCCBendoflife
To read Jason Negri’s columns on these issues, visit www.dioceseoflansing.org