Saturday, July 10, 2010

Death With Dignity

This will be the last chapter in my series of blogs on pro-life issues, at least for now. I look forward to moving on to other topics. But first, I will write this, for my mother, Gloria.

As mentioned previously, the pro-life movement appears to be mainly concerned with two phases of life: embryonic, when a woman might want to terminate the pregnancy, and end-of-life, when a dying person may wish to end their own suffering. All the stuff in between - access to healthcare, preventable illnesses, nutrition (including whether or not it is consistent with pro-life principles to eat animals), being sent off to war to kill or be killed, and the fate of the environment, other living beings, and even the planet itself upon which we all depend for life - apparently is less important. So let's move on to end-of-life.

Mom wanted to end her own life. But not until it was time. She enjoyed life to the fullest. She was positive, upbeat, incredibly cheerful in the face of a horrible illness which at the end made her life a living hell, especially the last 18 months or so. Mom was diagnosed with type 1 diabetes at the age of 7, in 1944. She was in the hospital during Easter when all the children in the pediatric ward were given Easter baskets filled with candy. Little Gloria dearly loved chocolate. Since diabetics were not allowed to have candy, the nurse placed her Easter basket on the windowsill where the chocolate was sure to melt, and Gloria being too weak to get out of bed and rescue it, had to watch while her chocolate bunny was ravaged by sunlight. The nurse later came in and said, "Oops, it's melted! Oh well, it's no good anymore, best throw it away" and removed the basket. This incident, which Mom remembered vividly, I believe traumatized her forever and set the stage for future indiscretions. This, along with the awful torture of the endless needle sticks for blood testing and injections of insulin, and the doctors' solemn prognosis that this was an incurable disease that she would have to endure the rest of her life, helped form her determination to defy the doctors and eat candy and do whatever else she damn well pleased, just as soon as she got out of that wretched hospital.

And so she did. Gloria lived her life in total denial of her diabetes. She was determined to live and enjoy herself as any normal, healthy young person would do. She loved soda pop. As she got a bit older, she loved beer (and this may have been the one healthy habit she consistently followed, her 2 light beers every night, as recent studies have shown beer surprisingly may be beneficial to diabetics). And she loved cookies and chocolate. She enjoyed going to dances and parties and swimming in the ocean. She did not let anything get her down. When she met and married my father, she was determined to have a baby even though the doctors absolutely forbade it (see previous blog entry, "The Gift of Life.") and we both survived against all odds. The experience must have scared her enough, though, because despite her love of children and desire for more, I never had any brothers or sisters. But Mom was a wonderful companion and playmate. Together we rode sleds in the snow and boogie boards on the waves. We took our dachshunds for walks. We used the most fabulous selection of crayons in our coloring books.

When I was just a toddler, Mom taught me to bring her a can of Coke when she would feel the onset of hypoglycemia, when her nutritional intake failed to match her insulin dose. At times her blood sugar crashed too quickly and she was unable to drink the sugary beverage. It was very frightening to find her fallen on the floor, sweating and shaking, her eyes rolled back, unable to move and unable to speak clearly. She taught me how to dial 911 and we made it through those times.

When I became old enough to be aware of what was going on and had some understanding of basic biology and medicine, perhaps in my 20s, I began to nag my mother about taking better care of herself. Should she really be eating those cookies? Drinking that soda pop? I was told that she needed it "for emergencies." Well, this is perhaps true as far as it goes; an insulin-dependent diabetic is allowed to have sugary snacks in a situation of sudden hypoglycemia in order to avert insulin shock - but only to tide them over until they can get Real Food! Frankly, Mom was not that interested in Real Food. Oh, she was a great cook and made some wonderful healthy meals for her family, but when it got right down to it, she really loved cookies. And cake, and Yoohoo, and Coke. And over the years I watched a pattern develop where Mom would be "not hungry" at mealtime and then a few hours later would require soda or cookies to prevent her blood sugar from crashing. And then again a few hours afterwards, when that sugar rush wore off. I can't tell you how many times I saw Gloria refuse Real Food in favor of cookies. It is unclear to me whether her doctors simply didn't know about nutrition (which seems entirely possible based on what I have since learned about medicine), or whether they did, and tried to inform her, and she simply ignored them. As for exercise, she had no interest in it. Besides, exercise was liable to make her blood sugar plummet and send her into another episode of insulin shock.

At times I became very angry and begged her, "Please, Mom, for God's sake, take care of yourself!" However, in retrospect and, again, knowing what I know now about the limitations of medicine, I can sort of see her point. Mom had very severe "brittle" type 1 diabetes, which is the kind where basically no matter what you do, no matter how carefully you try to follow the rules, your blood sugar will always be out of control. Also, until relatively recently, there was no home blood test for glucose; for most of her life they only had a urine test, which by the time the sugar spills over into the urine, your blood glucose level is already dangerously high. In addition, they only had insulin derived from pigs and other animals, which was not 100% compatible with human biochemistry and probably caused additional damage to the body. Based on everything Mom had been told by the doctors, she was going to have a very difficult life and die a very horrible death, no matter what she did; so perhaps she felt, why not just enjoy my life while I can?!

Nonetheless, I persisted in nagging her. Finally I said, "Mom, aren't you worried about what can happen?!" Loss of eyesight. Kidney failure. Amputation of limbs. Brain damage. On more than one occasion we had this conversation and she, being sober and fully aware of what she was saying, replied calmly: "Yes, I know what can happen. But I have a plan. If and when it ever gets to the point that they need to do an amputation, I will take an overdose of insulin and kill myself." "But wouldn't it be better to just take care of yourself?!!" I protested. She replied, "Even if I followed all the rules 100% there is no guarantee that it won't happen." Of course, she was right about that, although she could have improved her odds significantly. Even today with the best technology available, diabetics are still losing their eyes, kidneys, limbs and brains despite toeing the line and obeying everything their doctors tell them to do, and mainstream medicine cannot do anything about it. And as it turns out, doctors know even less about diabetes than we thought, as research in the last year or so indicates the line between type 1 and type 2 is blurred and not well understood, and patients are often misdiagnosed, contrary to what we have been led to believe all along. Meanwhile alternative medicine, in the form of the Gerson Method, is able to cure type 2 and even keep type 1 in check by means of a strict vegan diet, but this has not been well publicized. (This brings us to why mainstream medicine is bogus and impotent, but that is a topic for another blog entry.)

Anyway, we had the above conversation on more than one occasion and each time Mom calmly and clearly voiced her plan: When the diabetes got to the point of being unendurable, she would end her own life.

The gangrene first began in 1995 when she was a competitive ballroom dancer and somebody accidentally kicked her in the heel with a stiletto shoe. The wound never healed, and since Mom refused to see a doctor, the gangrene progressed until by the time I was visiting and saw it, I knew she was in serious trouble. Not that any doctor probably could have prevented it. The blood vessels in her extremities were closing up. They had to remove her heel and she could no longer dance. At that time one of her doctors told me they didn't expect her to live 5 more years. I guess she fooled them.

In 2008 Mom became almost completely blind and her memory was going. The nonhealing foot wounds became worse and she was in nearly constant pain. She could no longer use her hands due to neuropathy. She could not even lift a fork to feed herself. When we went to karaoke Dad and I had to lift her glass of beer to her lips. Still she remained impossibly cheerful and sang beautifully, knowing the words by heart. In November of 2008, after being told that there was nothing more the doctors could do and her right leg must be amputated, she finally broke down one night and sobbed to me, "Please, please don't let them take my leg! I would rather die!"

But she had no control over the situation because her lifelong plan had failed in ways that she could not have imagined. Mom had never forseen that the diabetes would paralyze her hands so that she would be unable to give herself the insulin injections, and therefore would not be able to take her life by insulin overdose as she had always planned.

She asked me what would happen if she didn't have the amputation. I explained that the gangrene would slowly spread up the leg and she would eventually die of septic shock. It would be a long, painful process. She said, "Well I'm not afraid to die, but I don't think I could go through all that pain... But I don't want to live without my leg! What would you do in my place?" I replied that if I was her, I personally would not have the amputation, but I could not recommend that to her, due to the very unpleasant form of death.

I then turned to Dad and asked, "Do you think we should take Mom to Oregon? [where they have assisted suicide/Death with Dignity]. You know she always planned that if this were to happen - " He became very angry and replied, "I don't care if she does want that, I will not go along with it!! She is going to have the amputation!" Since he made his position very clear, I didn't bring it up again. Maybe I should have.

So Mom underwent the amputation. I had prayed that she would die in her sleep while under general anesthesia, which in her debilitated state would have been a strong possibility, except the surgeon had already thought of that and decided to amputate her leg while she was wide awake, under spinal anesthesia. He cheerfully informed us that she was fully aware and they kept her talking the entire time. The horror of this is beyond comprehension. Oh, assuming the spinal anesthesia/regional block is effective, you won't feel any pain; but you can hear the saw cutting through the bone as your leg is being sawed off. The conscious C-section under spinal anesthesia that she endured giving birth to me must have been a piece of cake compared to this. We were assured that the spinal anesthesia would keep her out of pain for many hours after she left the operating room. Spinal anesthesia can block both the motor and sensory nerves, so it paralyzes you while blocking the pain. In her case, however, the sensory part wore off soon after the surgery, so that she was screaming in pain, while the motor part continued so that she was paralyzed from the waist down, screaming, "Oh God, it hurts! Why can't I move my legs?! Did they take off both of my legs?!"

I made several trips to the nurses' post begging them to bring her pain relief and it took them hours to arrange it. They were short staffed. As the spinal anesthesia wore off, Mom had horrible pain in the "phantom limb," much worse than the actual leg ever felt before the amputation (and the "phantom pain" in fact persisted until her death). She began thrashing around and the IV in her arm came out, the bandage on her leg stump fell off, and the staples on the stump began to tear out. While my mother sobbed, I had to help the nurse replace the IV and bandaging because there was no other halfway qualified person available to help. Finally after a few more hours somebody brought morphine. It didn't touch the pain. They gave her more, still with no effect. At one point when I was alone with Mom in the room, she sobbed, "Oh God, please just let me die!!!" After I begged and pleaded with the nursing staff, they put a call in to the surgeon to get her something stronger, Dilaudid, which eventually helped relieve the pain so that she could finally drift into merciful sleep.

Mom was never the same after the surgery. Severe dementia set in, as well as depression. Medicare provided physical therapy for a little while, until they realized it was hopeless because she was unable and/or unwilling to do the exercises to strengthen her upper extremities to enable her to manuever from bed to wheelchair, to toilet, or anything. And although the surgeon had said she could be fitted with an artificial leg, it soon became obvious that this would not be possible due to the way the amputation was done as well as the sensitivity of the stump; even a light touch was sheer agony, and a prosthesis would put unendurable pressure on the stump. Even the bandage began to create sores, and the sawed off femur bone tried to poke up through the skin on the front of what was left of her thigh as the stump spastically jumped up and down. Mom tried to laugh about it, saying, "Look at my crazy leg, it has a mind of its own!"

I am providing all these gory details to illustrate what a person goes through in this situation. There were more - all the little indignities of being completely helpless, bedbound, unable even to control one's own bowels and bladder - but I won't elaborate on those.

Mom was in constant pain. She was miserable. She tried to be a good sport and put on a brave face at karaoke, in her wheelchair, but at home she just sat and wished for death. She kept sobbing, "If only I could get up and walk!" She was sore from sitting and lying down. Food had no taste and she tried to refuse it, but Dad persisted in feeding her. What else could he do?! I knew the end was near one evening when I brought her a beer and she refused it, saying she had no interest. As the dementia worsened she became more agitated and resistant and they drugged her to the gills on Haldol so that Dad would be able to force food down her throat, if she didn't manage to spit it back in his face. The Haldol made her a complete vegetable but she was still in pain.

At Christmas 2009, knowing that the end was very near, I brought her gifts of all her favorite chocolates and cookies - healthy organic ones as much as possible - but at that point she was no longer able (or willing) to eat. They were talking about putting a feeding tube in her and I had a serious talk with Dad about Hospice and thank God, their doctor agreed, because Mom had wisely made a Living Will when she was still in her right mind and able to state her wishes, where she very clearly stated that she did not want feeding tubes or other artificial means to prolong her life when the quality of life was gone. I recommend that everyone do this, specifically state exactly what type of care you want at the end of life, although the doctor told Dad, "You know, we can easily override the Living Will if you want to." ! So hopefully your wishes will be respected, but there is no guarantee.

In a society where assisted suicide is not a legal option, Hospice is the next best thing. At least, thank God, we are not legally required to accept artificial measures to prolong our life if we don't want to! That would, after all, be entirely possible if the pro-life agenda were taken to its logical conclusion and enforced by law. With the modern technology that is available, we could be hooked up to machines in a hospital and kept "alive," prolonging our misery indefinitely. Fortunately that is not the case and we still have a choice.

Mom's choice was Hospice and they were truly angels. They brought the morphine that made her final days peaceful and free of pain. They instructed Dad to stop force feeding her when she clearly did not want it, as it was only making her feel worse. They explained to us the natural dying process and how the body shuts down digestion and other systems as the person prepares to move on. Mom was ready to go. More than ready! She had been ready for over a year but had been kept here against her will, imprisoned in a paralyzed body wracked with continual pain as her mind lost all ability to comprehend or enjoy anything. Finally, at last, she would be released, and she would die in the comfort of her own home, not in the cold, frightening hospital environment.

On Mom's last night on earth I sat by her side, holding her hand while I prayed the rosary on a lovely set of beads sent to her by one of her best friends (thanks, Irma!). Her blind eyes stared off into the distance as if she was looking into Heaven. When she passed over to the other side on January 21, 2010, just a few days before her 73rd birthday, she looked totally peaceful and 20 years younger. At the end she had a good death. But she should not have been forced to endure that last horrible year. Wasn't I grateful to have that extra year to spend with her? Selfishly yes, perhaps; but in all honesty, I would rather have given that up to save her from the hell she endured during that awful year.

Mom wanted to end her life before it got to that point and she should have been legally allowed to do so. She wanted Death with Dignity but it was not a possibility where we live, although it is in some places (Oregon, I think Washington, and the Netherlands). It is my personal belief that people should have the right to end their own lives as they choose.

I have heard the argument: "If assisted suicide is legal, who will speak up for the value of my life, if I decide my life is no longer worth living?!" Well naturally your family, friends and coworkers will, because they would miss you and would selfishly want to keep you here. But if you indeed decide that your life is truly not worth living, ultimately it is your decision to make.

Personally, I do not think that it would be my choice. In the Episcopal tradition we are taught to join our suffering with Christ on the cross and so the agony, offered up, would become a spiritual experience. Of course, that all sounds very nice in theory, but in reality, I cannot say what I would actually do if I were in Mom's situation. We certainly should not judge another person for making such a choice when we have not walked in their shoes and endured the suffering that they have experienced.

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