By A.C. Woolnough
These days, we seem to be at odds with each other about everything. We disagree on politics, religion, education, the environment, climate change, health care and on and on. For the next few hundred words, it is my goal to deal with some other tough issues. There is no right or wrong to these issues, but we can learn from each other and maybe use this discussion as a model for dealing with our differences. What are these difficult and thorny issues? In a word: bioethics. Bioethical decisions are those made with no guarantee we make the correct choice. There is no single standard or checklist that ensures we’re doing the right thing. Almost always more questions are asked than answered.
Some of the more common bioethical decisions involve our pets — Fluffy, Spot, Rover or Champ. For example, what do we do when our cat gets sick or injured? Do we hope for the best and do nothing? Do we take her to the vet? How much are we willing to pay for an exam, drugs, surgery or radiation treatment? Can we afford care? Not just money, but time. Can I take a day off? Can I claim a sick day for a sick puppy? An even harder choice involves putting a pet down — a euphemism for euthanasia — intentionally ending a life to relieve pain and suffering. At what point and on what basis do we make that decision? Doing nothing is also a choice. My suggestion is to gather facts, look at both sides of the question, examine the consequences, get expert input, take an appropriate amount of time and live with the outcome knowing there is no one, single, perfect answer. Almost always there will be questions and regrets with whatever choice is made. Complicating things even more is knowing that although some decisions are reversible, many are final.
If you think it’s a tough question when your pet is involved, imagine the difficulty when it is mom, dad or child. There is no “right answer” and the consequences are profound. A similar strategy for making these bioethical decisions can be employed as outlined above. The situation does not have to be life/death. There are many other situations in which right and wrong are not easy to determine. For example, many PWPs (persons with Parkinson’s) live with minor motor symptoms and are perfectly OK to drive. On the other hand, if a PWP is experiencing dyskinesia (uncontrollable movements as opposed to tremor), it may be time to take the keys away. Who, when and how this happens are bioethical decisions. Factors like self-worth, control, power and relationships may complicate matters. In this case, prior discussion and agreements may lesson resentment and preclude or minimize depression (already a common non-motor symptom of PD). When is it time to put grandpa in a nursing home? Again, who makes that decision? What factors influence the decision?
In my columns related to Parkinson’s, I always try to reference research — an area rich in bioethical decision-making. Sometimes the questions are more philosophical. For example, I have donated blood numerous times for various research studies. Whether for genotyping, searching for antibodies or some other purpose, who owns the data collected? Some situations are money related. What if some component of my blood helps develop a new treatment or drug? Should I share in the profits (if any)? After all, it’s my blood. Should people get paid for participating in research? Should people have to pay to participate in research? For example, last month I participated in two studies at NIH (National Institutes of Health). Either of these two projects might lead to new or better treatments for Parkinson’s—a direct benefit to me and my family. A tougher question for scientists involves testing new procedures or drugs on humans. now. They may have worked in rodents and primates (a bioethical debate itself), but the first human trials may still carry a large amount of risk. Who decides when it is time? Bioethicists have refined the process of decision-making to include disclosure documents, IRBs (institutional review boards) and so on to help guide us. Nevertheless, think about what factors might have led the first person to volunteer for deep brain stimulation surgery. (DBS involves drilling holes in your skull and inserting electrodes deep in the brain.)
An entire universe of bioethical issues abounds in health care. Incredibly difficult decisions must be made. For example, when my father (who had Parkinson’s) fell into a diabetic coma, it was up to my brother and me to decide whether to use extraordinary measures to prolong life or to let nature take its course. Another example is choosing a drug, treatment or surgery that significantly improves the quality of life or even cures the patient but carries the risk (say 10 percent) of death.
Ethical decision making can mirror the bioethical process. In doing so, maybe we can learn to carry on respectful conversations, acknowledge our differences, understand that decisions have consequences and allow that our individual and unique situations can lead us to make difficult but different choices.
After being diagnosed with Parkinson’s Disease, A.C. is calling on his 37 years in K-12 education to became a “Parkinson’s Warrior”educating the public, advocating for a cure and participating in research.
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