Reflecting on Summer Skills Lab: “Intentionally Preparing for the End-of-Life”
shared by Dr. Kathy Neely
Pastor Julie and I were honored to meet with about fifty LaSallers this past Sunday as part of the Summer Skills Lab. Our discussion centered on how each of us might work toward “Intentionally Preparing for the End-of-Life”. Pastor Julie shared some of the impetus toward setting up this presentation: her recent rollercoaster journey with her mom and the life-threatening uncertainties tossed in their paths. Julie’s encouragement for us all was to have early-and-often conversations with those we love regarding our heartfelt, important values.
What would these conversations entail? Some of us are imminently or currently “walking a dear one Home” - a privilege and to be honest, also a sacred burden. In our conversations with these dear ones, we would encourage them to share what they value at the end-of-life so we can do our best as their spokespersons. And also, all of us, being mortal, would do well to have conversations as well. We would begin with conversations with God. As we get some spiritual clarity, we would initiate further conversations with those who may in the future care for and decide for us.
We also discussed the process of shared medical decision-making, which begins on the foundation of a trusting relationship between the patient and health care provider. To this process, the patient brings their personal values. What, to me, is a “life worth living”? What medical interventions to preserve life are “worth it” and what are excessively burdensome? The health care provider brings expertise – diagnosis, all the interventional options that address the diagnosis, the burdens, benefits, risks, and likely outcomes of these interventions. With the patient’s and provider’s cards all on the table, as partners in this process, they make a choice. Undergirding this process is the legal and ethical right of the patient to decline life-sustaining or life-saving interventions that the patient determines are disproportionately burdensome and/or do not restore a sufficiently good quality of life.
Uncertainty is the backdrop of any decision-making. If we knew the future, say, of today’s weather, or the stock market, or that new relationship we’re getting launched, we could make perfect plans, and make them well in advance. In the same way, uncertainty clouds planning for our health care in the future. Decisions to withhold or withdraw life-sustaining treatment are the most ethically and clinically sound when done in imminent, real-life contexts as opposed to guessing at distant future hypotheticals. That leads us to the most important advance decision we can make: in the event we lack capacity to make medical decisions ourselves, who is the WHO we choose to bring our values to the table, in real time, with real data? The State of Illinois provides us with the means to create a document to give legal traction to our choice of WHO: the IL Health Care Power of Attorney (HCPOA). In class, we reviewed this document, which can be completed free, without an attorney or notary, step-by-step.
https://dph.illinois.gov/content/dam/soi/en/web/idph/files/forms/powerofattorneyhealthcareform.pdf
Once we have determined the WHO, it is time for more conversations! We do well to begin with the WHO we’d like to legally authorize in our HCPOA document, to let them know of the role we want them to play, and to give them what they need to know about the values we would want lifted up in medical decision-making. If they agree to serve in this role, we can proceed to make the HCPOA document widely accessible in times of crisis. Unfortunately, accessibility is on us (there exists no central repository – go figure). Suggestions to get our HCPOA quickly on the radar screen include submitting it to our health care systems (to be scanned into their electronic medical record) and doctors’ offices, saving on our cell phones, sharing it with a whole number of trusted loved ones (not only with our WHO), and putting it in a plastic bag in the freezer for easy access. We also talked about accessibility through the LSC office, which might be a site for parishioner end-of-life info; when alerted about a parishioner’s hospital admission, the pastoral team will have permission to contact the WHO and perhaps other loved one’s as previously directed by the parishioner. Stay tuned for more regarding this idea.
Pastor Julie and I are eager for feedback as the pastoral team considers next steps evolving from this workshop. We would be glad to hear from you!