Lately, I have found myself thinking about the areas of my life in which things do not fit neatly into a box. As Forrest Gump said; ‘Life is like a box of chocolates and you never know what you’re gone get.’
One minute everything is all ‘hunky-dory’ and the next thing you know life is a train wreck; we are not even sure what hit us. As many of my dear friends and their loved ones have suddenly taken ill and some gone to be with the Lord, making decisions about my (our) health and that of others we love appears more complicated than I (we) ever imagined. Even as a physician, the answers are not always clear cut or black and white. Some of the decisions we have to make on behalf of our loved ones seem like they are more complex as we age.
Learning to make the right decisions is something that does not come easily if you tend to live your life in the grey areas as I often do these days- not by choice but by sheer life’s design. For instance, sometimes what I want as a patient is directly opposed to what I want as a doctor or know that needs to be done as a doctor or neuroscientist to advance the science. As a neurologist, I know that medicine is much an art as it is a science. Perhaps even more than we realize. As with everything in life some have more passion and talent for the art than others. This means a lot of trial and error (more for some than others) to reach the right combination of medications and treatments to make me (patients) better. However, as a patient and an Inpatient, one at that, I want to feel better yesterday and don’t like to have to feel like a Guinea pig when trying new treatments.
In this age of Obamacare, doctors are under a great deal of pressure to see as many patients as possible in a short amount of time just to stay afloat in the business side of the practice – but as a patient no one wants to feel like just another number. We desperately need someone not only to listen to us as people with living with a chronic disease; but to also to understand our needs. This is where having knowledge of both is greatly needed to arrive at the right decisions in the care of any patient. I am extremely glad to know there are new centers popping up in various universities like John Hopkins University that offer classes in ethics and decision making to prepare doctors, health professionals as well as researchers to understand the complexity of decisions that need to be made on a daily basis regarding others life’s.
Sure it’s easy to recommend no driving when clinically mandatory but what if this is the only person who drives in the family on whom everyone depends on for transportation for school, work, shopping, doctors’ appointments, extracurricular activities, etc. ? Of course this decision will be met with a great deal of antagonism more from the person being asked to quit driving as well as from the rest of the family; as opposed to a person who is retired has no young kids and has others in family who can do driving!
After watching the heart wrenching story of ‘me before you’ based on the novel by JoJo Moyes by same name.I am torn even more as a physician and patient with the struggles of others and even my own wishes should I ever become in a state where there is no more quality of life. What is morally and Ethically correct does not always align with the patients’ or family wishes. Should we be allowed to play God? Who decides? When do we decide? Are there consequences to this type of thinking? Are our decisions sound? or emotionally charged based on what we may be feeling at the time?
There is no easy answer and ultimately we all have to make our choices based upon our convictions and religious beliefs. However, as a Christian and physician, I know for a fact that miracles do occur, that God always has the last say, that physicians make mistakes and new advances always in the horizon. Plus, I also know that we tend to make poor decisions when we are emotionally exhausted, fatigued and in pain. I have had enough pain in my life to know that it does not take very long before it begins to grate on your nerves and those around you. However, I have also learned that nothing, even the worst, pain last forever!
Therefore, it is important to always allow some passage of time and reevaluate your wishes and decisions because feelings and circumstances change. One should never underestimate someone’s will to live and fight either or vice versa. However, this does not mean we should give up, take our own life, or worst ask others to take our life. It’s one thing to stop medications, it is another totally different to stop feeding, watering, and oxygenated if needed to survive. Many times as a physician, I had to abide by families wishes on a patient that I would never have given up on and many other times I have wonder why we were forced to hang on to someone who was only existing. As you see I have cried many times for others. I cried so very much at the movie, I just mentioned, and was so extremely disappointed in the ending – which unfortunately has happened several times with people chronically ill who want to terminate their own lives. Aside from the fact that he was euthanized, as a physician I found several problems with this. Seems like sometimes, as he did in movie, we (he made) make a decision based on emotionally charged depression and frustration and others feel guilty about their own health and pleasing the invalid they go along with these irrational thoughts even if they themselves do not agree. Sadly, even when circumstances change they feel they must stick to a plan agreed upon and are not willing to allow for life’s variables such as love lifting depression to derail their initial thought. As a caregiver, team player, physician, and person with PD, I encourage everyone to reevaluate their wishes and desires every so often especially taking into accounts new treatments and new life’s circumstances.
For instance, I had a patient with severely advanced Parkinson’s disease who had tried everything and was now bed bound unable to swallow and was having trouble breathing due to severity of muscle rigidity. He was placed in the nursing home thinking he would be transferred to hospice soon after. Within a few weeks of him being there, Neupro patch came out, so I had to try. Would you know it that he was able to regain motor function, feed himself and ambulate on his own. He left the nursing home and lived the next 4 years to the fullest.
Remember, ‘as long as there is life there is hope’… immortal words from an ancient slave who became a writer. (Life of Cicero)
Sometimes is good to step back and re-evaluate disease from a different perspective even if it does not fit neatly into someone else’s idea of what life should be like with PD as long as you are living to your full capability- must continue as if cure was already on the way!
all rights reserved – Maria De Leon MD