As physician Jessica Nutik Zitter says this week in her insightful New York Times article, “Who can speak for the patient,” there is more to taking care of a patient than just taking care of parts of the body.
Fortunate to have had a physician for much of my adult life whose specialty is the mind/body approach, I still rely on one of his key questions even when dialoguing with myself: “Okay, what is this really about?”
As it happens, “What is this really about?” is also a useful question to ask physicians and other professionals as well as family when you are the patient—and also before you are the patient. It is also a question that can be asked about just about any ambiguous circumstance.
What you don’t want is that “What is this really about” turns out to be about the aftermath of the caregiver’s decisions. Patients’ own wishes about quality of life are the ones that have relevance.
Revisiting the Terri Schiavo case, the Karen Ann Quinlan case, and the Nancy Cruzan case makes clear the need for not only communicating wishes but making sure that these are clear and convincing to those whose convictions might otherwise intrude.
In these cases, opposition in the form of disagreeing family members and disparate religious beliefs did intrude, keeping patients on life support for not days, not weeks, but years while the courts came to conclusions and states created new legislation. Summaries and the “key learnings” from these cases are available online.
From the Schiavo case, the most recent of these, the website notes:
“There is much to learn from this case. Failing to make your wishes openly known, particularly in writing, can pull your family apart and can cost you and your loved ones untold burdens in suffering, financial expense, public airing of private lives, and emotional burdens beyond measure.
It remains possible that both parties to the litigation were "right" in that they believed in what they were doing.
Money, remarriage, emotional attachment, divergent religious views, and disagreements over recollections of statements can lead to very different perspectives. When this occurs, great sorrow and even outright injustice can be carried out by otherwise well-meaning participants.”
To open a family conversation, try a suggestion this week in the “Dear Abby” column--a link to publications that might assist family and others concerned with caring for a family member. A packet can be ordered online at no charge, but the various publications in it can also be downloaded from the site. It can also be obtained by calling 888-878-3256 weekdays 9 a.m. to 9 p.m., or writing to Family Caregivers Kit, Pueblo, CO 81009.
The publications from this site include these:
• Consumer Action Handbook (3.8 MB)
• Health Scams (1.82 MB)
• Money Smart for Older Adults (584 KB)
• Managing Someone Else’s Money: Help for Agents Under a Power of Attorney (217 KB)
• Managing Someone Else's Money: Help for Court-Appointed Guardians of Property and Conservators (246 KB)
• Managing Someone Else’s Money: Help for Representative Payees and VA Fiduciaries (271 KB)
• Managing Someone Else's Money: Help for Trustees Under a Revocable Living Trust (246 KB)
• My Medicines (274 KB)
• Use Medicines Wisely (2.43 MB)
The AARP also recently is advertising a book, this one called The Other Talk: A guide to talking with your adult children about the rest of your life. It includes suggestions for creating successful conversations about finances and health.
My own wishes are expressed in a documented living will as well as in family conversations and in my other lifestyle choices—partially because of one of my philosophical interests: What are people for, anyway? In my book, Dreaming Your Dharma: Beyond Intuition, I concluded that people are here to help each other along the way while they are here. To do what? To live their own lives in their own way.
What that may take on a global basis is a good meal on every table, universal free education, security in the practice of universal human rights, and the right to a dignified death as individuals themselves perceive it. Add to that practical mix the Dalai Lama’s wish that “If every 8 year old in the world is taught meditation, we will eliminate violence from the world within one generation.”
In individual lives, though, health care proxies and living wills, along with family conversations, are what count in decision-making, and they should be updated as circumstances change. Elder law attorneys can also help sort through options to make sure that seniors’ rights are well understood.
Add to all these that health care workers also require time for self-care. The Community Health Worker Network of Buffalo periodically provides a Chew and Chat for its front-line workers. On their menu currently—along with a healthy salad lunch--is a lunch hour gathering in a local park for remembering to spend time outdoors; to meditate; to stretch or practice yoga, and to talk to others for support.
The CHWNB quotes social worker Amy Pershing: “The ability to care for oneself is predicated on the ability to consistently go inward and listen to what is there with open, compassionate ears.”
Linda Chalmer Zemel also writes the Buffalo Books column. She teaches in the Communication Department at SUNY Buffalo State College.