“For to me, to live is Christ and to die is gain. If I am to go on living in the body, this will mean fruitful labor for me. Yet what shall I choose? I do not know!” –Philippians 1:21-2 (I typically tie a verse to the day of the month, but this is more focused on the topic today…)
Fall is upon us in the Ozarks although it feels like a stormy mix of spring and winter, looking at the calendar says fall-ish. I have one little smidge of topic today for your consideration, but it is huge…and I want your honest take on it, please. 🙂 And, be nice or I will delete the comment before it sees the light of day like a grumpy old troll censor.
The topic is a quote I copied from a Facebook discussion, followed by my take:
“We need to have the Right to Die with dignity law at the first diagnosis of Alzheimer’s/Dementia”
The person who posted this frequently has posted similar sentiments. He/she is a clear-thinking, rational person and not a troll with an obvious agenda, so he/she deserves my thoughts and yours as well. Freedom is back in style…or so I wish.
First, some stats and definitions:
According to research by the NIH and the Washington State Department of Health, Disease Control and Health Statistics Division (Death with Dignity Act Report), “The most common justifications cited for supporting a Death with Dignity Act (DWDA) have been the principles of autonomy and dignity. First, patients themselves have said so, ‘Losing autonomy’ is the most cited reason for DWDA patients to choose PAS (Physician Assisted Suicide) : 91% of Oregonian respondents13 and 87% of Washingtonian respondents14 named it a concern. Further, they said that autonomy was far more universal a concern than both ‘inadequate pain control or concern about it’ (26%, 41%) and ‘losing control of bodily functions (47%, 43%). Further, ‘less able to engage in activities making life enjoyable (90%, 84%) and ‘[l]oss of dignity’ (77%, 66%) were the second and third most common responses. Pain and loss of physical control (to a lesser extent) correspond to the pain stimulus. However, each of the other three concerns—those most commonly cited—are signs that the patient has despaired; they are intellectual and reasoned responses to their situation.”
- formal reserve or seriousness of manner, appearance, or language
- 2: the quality or state of being worthy, honored, or esteemed
- 3a: high rank, office, or position b: a legal title of nobility or honor
1: the quality or state of being self-governing especially: the right of self-government. The territory was granted autonomy.
2: self-directing freedom and especially moral independence personal autonomy
3: a self-governing state
- End-of-life issues are hard, whether you are a Christian believer, another faith adherent, or an atheistic believer. There are few easy answers because, according to my faith, death isn’t natural…it is a sad event that reminds us of the first sin in the Garden of Eden and that Christ died for all of those who believe. He tasted death…a painful, undignified one at that. He gets it. It is hard. It is painful for everyone involved. We will all experience it through others and ourselves (unless something changes). Let’s not romanticize one way of dying over another…it is ugly.
- Dying “with dignity” is a matter of opinion. I have seen folks literally rot away with cancer, with dementia, and with other diseases…and still be completely outwardly dignified. I have also seen plenty of folks in perfect health with zero apparent dignity at all. I have seen many folks in between. Is someone’s lot in life being sad the same as being undignified/lacking dignity? See, I think this may be an “Us problem”, in many cases, and not a “Them problem”. Is it a suitable rationale to end a life because one’s lot in life is hard to look at?
- Being made in the image of God is a very serious and amazing reality, and one that shouldn’t be glossed over. Everyone, in every state of health, in every state of belief or non-belief in God, and the rest…are all made in His Image. Harming/ending the life of image-bearers is serious and had better have a great and Biblical reason.
- We are called to care for everyone…all image bearers until they die. Here is a great piece that discusses such.
- As this piece points out, we are not all-knowing. Cures happen. They do. Treatments happen. Causes are not always as lost as we think…and we are arrogant to think otherwise. Remember, within my lifetime science has thought the world would be destroyed by an ice age, by a dozen pandemics, by acid rain, and by (Enter the politician you don’t like’s name here). Science is also right a lot…but, something as permanent as death should be treated seriously and free of bias.
- Involuntary physician-assisted suicide can and does happen.
- THere are soooo many good times yet after diagnosis. Focus on what remains, not what’s gone. 🙂
- I think what makes me so frustrated by the quote above is that it assumes that life is over at diagnosis. That is simply terrible and erroneous. Mom was diagnosed some 10 years before she became symptomatic. Biomarker research including a study I will be participating in next week, hopes to allow us to know our likelihood of getting dementia even faster and without invasive tests. If you make a “gentle” suicide easy and readily available, which some would promote for the sake of autonomy, knowing that you will get dementia 20 years down the road and the ensuing shock, mixed with depression, could make people make poor/uninformed choices.
- Follow-up to previous point- Dementia was preventable for 33-40% of those who get it. The earlier we know, we should celebrate instead of calling it a death sentence. Oh, and as a side note, we are ALL TERMINAL. Nobody is getting out of here alive, so our best options include making the most of every moment and looking heavenward.
- Palliative care (typically hospice-oriented) is excellent at fighting pain and is amazing at other end-stage issues. If you are not familiar with them, you need to be if you have a loved one with the disease. Mom has now been under their care for nearly 2 years….and I don’t regret it for a second. They will do the best they can to assist her in dying gently and with as little pain as possible when her time is up.
- Mom had clear advanced directives NOT to use heroic measures (CPR, feeding tubes, etc…) to prolong her life. That was autonomous. Perhaps not enough so for some, but for her it was… Knowing her wishes made this stage of her life very simple. Please make clear your last directives before it is too late.
- There is an active and a passive aspect to this hard topic too. “Allowing” someone to die while keeping them (palliatively) pain-free as best we can is “letting nature take its course” (although ‘nature” isn’t a force that has a course…), but causing a speedier death by actively ending life is different. To me and to historic Christianity, passive is acceptable while active is not. However, there is a fine line and a battle of semantics that could be hashed out here…
- The population being too high is an unscientific and terrible reason to support ending lives at any request. Falling birth rates, the pandemic, economic challenges, and other factors are pointing the US the same way many countries are: too few young people to support a huge middle age and older population. (Population crisis=too few!)
- Nevertheless, this is a hard topic that I refuse to be too harsh on people for disagreeing with me on. I hate seeing suffering. I hate mom sitting there, unable to do what she loves (and unable to do pretty much anything). I would LOVE her to be in heaven now instead. I really would. However, even though I know she will inherit heaven at her passing, I can still understand why unbelievers want an end for their loved one’s suffering too.
- There is nothing more God-honoring than to live a great life and stay strong in weakness all the way to the end. It also allows your family the opportunity to honor you by serving you and honor God by praying and trusting even more than ever. This matters…
- Is it healthy for a physician to go against their oath and “cause” harm…or is it that?
- How much autonomy do we really have anyway? We stand high and mighty, look up, and shake a fist/finger at God. Then we look at the sun for a few seconds and get a spot on our eye…or, if we are dumb, we stare at it and go blind…that quickly. The sun, by itself, should shake us and remind us of God’s majesty. We are not powerful, nor are we truly autonomous. As the Constitution and most of the founding documents remind us, freedom is a gift and rights are unalienable because of Who grants them.
- Yet, I get it and feel very bad that you and me and the rest have these decisions. I will not hate you and you shouldn’t hate me as we make this hard decision…What is your take? There are many facets to this discussion gem…what did I miss?
Sorry for such a sobering topic going into a beautiful fall weekend. I look forward to your opinions as I do not believe myself to be the know-all, end-all source of much. 🙂
Update: We had a nice meeting with mom Thursday. She had her eyes open quite a bit and she even coo’ed at my bother and sister-in-law’s puppy when they put her in mom’s lap. That does my heart good to know that “Mom the pet lover” is still present and happy, thank you very much. 🙂 We are in a pinch now because the nursing home apparently passes around Covid like a cigarette sometimes and they are in a new lockdown. Mom has to wear a mask in our 50-55 degree, outdoor meetings with her and every day it gets colder…It is only a matter of time until we are stuck outside the window again in mom’s Swan Song months. 🙁 Stinking pandemic and disease. 🙁
2 thoughts on “(Semi-)Shawshank Re: Dementia Day 580 (1 Year, 215 days): To Die is Gain”
Amen! Having just finished this journey, I can identify with both your concern and frustration with being a caregiver/observer. The loss of dignity is a big point and they feel embarrassed when many other emotions are gone. I don’t condone assisted suicide any more than I agree with abortions, but palliative care is a God send. I didn’t realize that dying is something that some people have to work at. The body seems to have an inborn instinct to survive, even when the mind and spirit are willing themselves to release this life. I hope you can take comfort in the fact that you have been there for your mother and she may have some moments of clarity to recognize and appreciate that. I am thankful to have had one fleeting moment with my husband when he asked about how he had treated me and apologized for being verbally abusive. It was so healing and moments later, that clarity was gone. In a month, he was gone. I know he finally is at peace, and so am I.
What a blessing in a hard situation. 🙂 Thank you for sharing that. It is a good example of God still bringing good out of bad situations. I really appreciate your comment. 🙂
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