Just off the red-eye from Seattle, Washington. A beautiful city with wonderful people. I was in Seattle for some of my Union for Reform Judaism work on our project on aging and baby boomers and spent Sunday with the Jewish Family Service speaking at a gathering that explored the “art” of care-giving. Several dozens of people gathered on a 70 degrees sunny day to talk and share issues and stories about their own journeys and how Jewish texts could provide a guide for this experience. It is truly amazing that this session brings out such powerful emotions amongst the attendees. Everyone has a story and each story, while similar, is unique.
That fact came across again in great detail and is worth reviewing. The fact is the subjective or contextual aspect of this new life stage of care-giver. What seems to be “true” one year changes as the context of the care-giver relationship changes. How one defines what a person’s “quality of life” is can evolve and change as the contexts of life evolve. The “wild card” of medical technology is the driving force in this point of view. Many people right now, are faced with having to make decisions about levels of care while trying to balance this sometimes elusive value of quality of life. This conversation came up again at this conference, as it does at almost every session. We wish to preserve a person’s dignity and quality of life, and yet struggle when we see contexts change so that this dignity and quality seem to be hard to gauge. There is no hard and fast rule. Like life itself, change is the only constant.
What this also points out, and this again was trumpeted loud and clear, is the need for families to have “the conversation” about treatment and decision making as life ebbs. There are a multitude of resources out there now that provide forms and guidance which allow families to have this conversation. Increasingly, religious communities are sponsoring programs that guide a person or family on how to make decisions from their particular faith perspective. The ability to have a conversation that is not embraced in crises, can be a gift that families can give themselves. It is invaluable that we know what our wishes are and that our family members are clear on those wishes, even if some might disagree. This conversation can reduce stress and avoid intra family disputes at a time when such agitation is most counter productive. What also is important to remember is that, given the changing nature of technology and one’s own points of view on these issues, a regular review of the decisions becomes essential.
This is not easy. It is often painful to have this conversation, yet, as we learned again at this Seattle gathering, such conversations are now part of life.