We are born into this world as cute little savages. After enough little bumps in the road we become civilized. We fit into our culture. We prosper. We die. We have, in general, no control over our birth or our death. Things happen. Cultural norms prevail. We are the fleeting carriers of an evolving stream of life.
China has recently relaxed the one-child per family rule. The old Hawaiian practice of placing a newborn, able to spend the night without feeding, in a temple basket has been discontinued. (If the child was not present in the morning it either had been selected for royal treatment or over the edge.) The child had no say in these practices of population control to prevent political unrest or starvation.
Death is a different matter. Birth is still one thing, one event (biologically); there is a second spiritual event in many cultures. Death is many things (physical, mental, and spiritual). We can plan for our death so we can live without fear.
Things happen. Many people just die. My dad just died, after a cup of coffee in the middle of the night. My wife’s dad also died suddenly. Our mothers both spent time in nursing homes. My wife’s mother was most upset to learn she had been resuscitated at the hospital, “Now I have to die again.” When she did die, it was suddenly, just after getting up into a chair for breakfast.
My mother was also concerned about remaining alive under the conditions she found herself. My wife and I were on the shift when she did die; each breath a bit weaker, each breath with lower blood oxygen concentration - - then total silence in the room.
Times have changed. The body-mind-spirit connection has been loosened. [This is difficult to write as now it is not just an academic exercise or an event in the distant future, but for real. Feelings, related to loss and grief, interfere. They have come and gone for the past two years.]
We both have living wills that have been updated as our culture (law and medical practice) changes. We both have selected body donation followed by cremation. So what is left to do?
Do no harm. Support life to the full extent of modern means. Spend more money in the last two weeks of life than in the rest of your entire life has been the cultural norm. There is not enough private or government money to do that now. This practice also ignores the question of, what does it mean to be a human being living in an acceptable environment? This is scary. What should we control and what should be left to things that just happen?
The American Indian and Eskimo both had a practice allowing the elderly to sleep in the cold until death. These people lived in a harsh and unforgiving environment. We, who are not addicted (or part of that culture), do not.
The function of residential care is to promote “life, liberty, and the pursuit of happiness”. It has three levels: independent living, assisted living, and assisted living memory care (secure environment). Skilled nursing in a hospital (short term) or in a nursing home (long term) make up a fourth level.
One can die suddenly. One can die suddenly at each level of residential care. A problem is produced when the probability of life, liberty and happiness decline to a point that the humanity of the patient or resident has been all but eliminated for an extended period of time. This brings me to the practice of medicine as we are now experiencing it.
The day that the doctor was “top man” seated next to God is over. Drugs are now approved that show a “significant benefit” over a control group; that is, 1/3 get better, 1/3 get worse, and 1/3 show no effect. Our neurologist explained the situation. “There is no way to know if this drug will make your wife better than if we did not use it. However, at her stage, it is our last chance to make a difference, if the drug works. The drug is expensive. I have sent a prescription to your pharmacy. Stop on your way home. If the drug costs you several $100, skip it.” Our HMO insurance will pay the over $2,000/yr cost. Our next appointment is in three weeks to determine if the drug should be stopped or continued.
[This same situation exists with blood pressure and cholesterol medications when blood tests and an appropriate “holiday period” are not included with annual checkups. Are you in the 1/3 that showed a significant beneficial effect? ]
Today the doctor is an advisor. The patient or the patient advocate must make the final decision over use of a drug that may or may not work. This is the environment in which we must now make decisions about death.
Yesterday I read an article by a doctor who extended this environment to all medications. Should we be giving near-death, very low quality of life, patients drugs that reportedly extend life by way of blood pressure, cholesterol, and etc.? This doctor’s article prompted me to write this post. The
probability these drugs are actually beneficial for my wife is not 100%. The probability these drugs are harming my wife is not 0.0%.
If the quality of life is no longer acceptable, then all measures to extend life should be stopped and just let things happen, naturally. This is hospice today.
This now puts us between “life, liberty, and happiness” (residential care and skilled nursing) on the one hand and hospice on the other. Where between these two extremes do we just let things happen? One of my wife’s best nursing friends who was, until recently, still living at home, made that decision with her family and died within the week.
In the above case the lady (a nurse practitioner) was of sound mind and fully knowledgeable of her situation. My wife, in memory care, is no longer fully aware of her environment. She is functioning much like many of the underprepared college students I worked with; strictly at the concrete level of thinking. There is no planning ahead. There is no relating of observations to produce a web of information (understanding) that can serve as the basis for her to evaluate her situation (or for students to further their learning and to earn high test scores).
Now to reevaluate our living wills and discuss this yet again with family members, the neurologist, and the family practitioner. As difficult as this is now, it will be more difficult later. Hopefully, the problem will not arise. [Our neighbor, in the next apartment, just died in the night within a few hours after I talked with her.]
Is going prescription free a better way to approach the dying process (stroke, heart attack, etc.) than continuing with current prescriptions that may or may not be effective? I have encountered several stories about how much better people felt when going prescription free (with the exception of prescriptions that have an immediate positive effect such as acid control and allergies, rather than waiting weeks or months for an effect that just may be a natural spontaneous recovery). Even many hospice patients life longer than expected prescription free.
[This Sunday morning, my wife, took very little part in the 10:30 exercise class she formerly found the most fun activity offered in memory care. She continues to rank with the lower 3 residents of 17 present today at dinner.]
[September 14, a week later, she alternates from happy and content to very short periods of anger and defiance that are strongly related to someone picking up something she is fixated on (napkin, toy, game, etc. that she can fit into her pockets or purse.]