The short, mumbling doctor, who curiously resembled an arrogant Barney Rubble whizzed in and out of the examination room quicker than we could say, “Doc?” We had many questions, but were still hurried along, feeling like part of a medical assembly line. We were the shadows who helplessly looked, listened and learned while a loved one battled a terminal disease, risky medical procedures and life-threatening odds. We were the support; backbone and shoulder to cry on…we were the family members.
I recently endured the painful journey of colon cancer; not physically or medically, but emotionally. The disease took one of my relative’s away, leaving this void, which quickly filled with sadness, frustration, anger and regret. The process of watching someone deteriorate from a completely unforgiving depletion of the body and mind is hard enough, but to also battle doctors and nurses along the way is equally draining.
Doctors Can’t Help It
Some doctors will answer your questions with no regard to the delicacy of the situation. They instantly become a robot filled with textbook explanations and cold, hard facts that they spit out in rapid succession. Numerous doctors seem bothered or annoyed with questions, while some try to mask their negative assessments and personal opinions with avoidance. The problem with being a specialist ranked among the top in your field is that you get easily offended. When we returned from receiving a second opinion, our doctor turned red in the face and began to speak in sharp tones.
I’ve had doctors simply walk out of the room on me when I question their judgment. “How dare you” is the expression written on their face, but if it’s one thing I’ve learned, it’s to question anything and everything. Why are we expected to believe everything we are told?
Doctors can’t help it; they have personal opinions about your condition. In the back of their head, they might even listen to the voice telling them that you’re a goner. When they purposely act upon these thoughts and it begins to affect your treatment is when you should be worried.
There were many times that doctors and nurses looked at my relative and wondered how she could live with her deteriorating condition. These opinions and judgments began to show through in their treatment of the situation and her health. She firmly believed that her life was in God’s hands and that it was her choice to continue fighting to live. If she had listened to the advice of her doctor and surrendered her last days to hospice, she would have never lived the five years past her predicted death sentence of a couple months. She would have never enjoyed five more birthdays, Mother’s Days, Christmas’ or Thanksgivings. She would have never seen her grandson play football or cheer him on in his first basketball tournament. She would have never walked the streets of New York City on a warm, spring day or gaze at the playful rabbits on the snowy plain outside her window. Although, we all hoped for a cure we were told would never come in her lifetime, we never abandoned our belief in miracles. As I look back, she had endured obstacle after obstacle, becoming a living, breathing example right before our very eyes.
The pain attacking her body was unimaginable to the doctors. They automatically bypassed my relative’s wishes to live at all costs and began to accuse her family members of selfishly keeping her alive. They would conduct one-on-one conversations and evaluations to make sure that she was acting on her own wishes. Every single time, she passed their inquisitions. Even delirious with pain, being rushed to the hospital, she murmured her wishes to be kept alive. One of the biggest issues with the doctors and nurses was her decision to be resuscitated if she should code, which refers to life-saving efforts if her heart should have stopped. All medical personnel urged her to have a “no code” status. One time, while reviewing her records, we saw that someone had handwritten this status in one of her papers. After that, we began to receive copies of all medical records and kept track of the notations made from doctors and nurses.
Knowledge is Key
You don’t have to get a PHD in medicine to be knowledgeable about the condition affecting your life. The best advice I can give to those dealing with a disease, regardless if it is dubbed ‘terminal,’ is to dive head first into research. Go to the library and grab up all the books you can carry. Surf the Internet for reputable medical websites, such as WebMD and learn the ins and outs of the diagnosis. There are different stages and levels pertaining to many diseases and you should be aware of each and every one of them. Join a forum and talk to people going through the same thing as you. It could lead to valuable pieces of information that you can incorporate in your life, even if it’s just tips on how to cope.
You don’t have to be at the mercy of your doctor. We learned this the hard way. There are a lot of doctors that follow a specific format when treating patients. It seems that patients are neatly categorized and dealt with accordingly. The doctor we mainly encountered with was the type that systematically handled our situation with minimal emotion. His philosophy was: if A happens and B happens, then C is definitely going to happen. If you were lucky to reach the end of the alphabet, you had suffered a long, painful death.
He looked upon our relative’s case as so hopeless that he started not mentioning all of the possible treatment options. We would always ask, “What next or what else is there to try?” My relative had received a variety of different chemotherapy treatments from a colon cancer list lacking depth. During the course of her disease, she tried every one of them. They would work for several months, some close to a year, but then the cancer cells would develop an immunity to the drugs and we were back to square one. After awhile, our options were running rather thin. The doctor started telling us that our last option for treatment was oral chemo and we had exhausted all other intravenous possibilities.
The Internet is truly a wonderful thing. I immediately turned to the Web and began to search for other options. It turned out that two newly approved chemo drugs had become available to the public. This important bit of information was never told to us. I researched the two drugs and was prepared to present my findings to the doctor. Of course, he was aware of them, but he still didn’t think they would do our relative any good. We persuaded him to put in a request. Together, the two drugs prolonged her life for another 1-1 ½ years. That may not seem like a lot to most, but to a person savoring every minute of every day that they are alive, it makes a great deal of difference.
The chemo doctor’s patience was wearing thin. His actions often showed that he was not pleased with our decision to continue treatment and not surrender to hospice care. He always pushed for what he called “quality of life.” This simply was not an option. We never pushed our preferences on our relative because after all, we were not physically going through the ordeal of terminal cancer, but we were always on the same page: she was going to fight and as long as God intended her to live, she believed He would.
Finally, the doctor succeeded in getting our relative to cease chemotherapy. One night, she was in a lot of pain and went to the hospital for assistance. In her moment of weakness, he said to her: “Morphine” or “Chemo,” but not both. That night, she chose a morphine pump to quietly lull her to painless sleep. In the morning, she whispered to us, “Do you think the doctor thinks I’ve decided to stop having chemo?” We nodded and she said she would fix it at her next appointment. A total of six weeks passed as the doctor stalled us from continuing chemo. He came up with every excuse in the book, telling us to return in another two weeks. Finally, without having anything to battle the cancer, it wildly spread and began to form disturbing tumors that grew outward from her body, creating severe open wounds. The doctor told us that any further chemo would surely kill her because her immune system would be too weak. This time, we did not take the chance and everything continued to go downhill from there. Despite this medical blow, we still focused on remission…positivity,.. a cure…another day.
Sometimes, we are riddled with guilt that we faced a pivotal moment in the battle against the cancer and momentarily faltered. We often wonder if we could have done more or said more or demanded more. She lived about a year after the termination of cancer treatments.
Doctors Do Not Know Everything
Throughout the duration of my relative’s disease, the doctors told us she was going to die on so many occasions that I began completely ignoring the words every time they were spoken. Doctors do not know everything and this case definitely proves it. After all, for many years, my relative was dealing with a misdiagnosis of Irritable Bowel Syndrome instead of the cancer. To give you more examples:
1) She had a seizure, fell out of the bed and hit her head.
They Said: After running several tests, the cancer has gone to her brain. What Really Happened: They forgot to give her medicine for a urinary tract infection, which compromised her immune system and caused her to have a seizure. She fully recovered from the incident.
2) Blood appeared in her urine.
They Said: She’s going to die. When? 2 days, 2 weeks, 2 months…. What It Really Was: A stint became misplaced, which caused the bleeding, which was corrected by a simple operation. She lived 3 years past this prediction.
3) While in the hospital, a doctor increased her morphine dosage too quickly, which caused her to stop breathing. She coded and had to be brought back to life.
They Said: She’s not going to make it, she was unconscious for too long and if she by some chance breathes on her own, she will never talk or move on her own again. What Actually Happened: She was off of the breathing tube in less than 8 hours, eventually came out of the coma and could carry on conversations like normal. Following this ordeal, she even attended therapy where she completed walking exercises.
4) Red blood cell levels were extremely high.
They Said: This is a sign that the cancer has spread. What Really Happened: Another overlooked urinary tract infection that was easily cured by antibiotics.
5) Her urine bag was not filling up.
They Said: She is no longer able to urinate. Her body is breaking down and this is a sign that she is going to die. What Really Happened: When nurses finally came to change her dressing, they discovered that her catheter had fallen from her body and that all of her urine was actually collecting in the padding underneath.
“You Need Social Services”
We had always fully understood the seriousness of her condition, but we refused to give up the slim chance that something might arise to prolong or save her life. Because of this faith in the unknown and occasional phenomenon, we were looked upon as having a strong case of denial. While asking the doctor a series of questions to better understand his latest assessment, he exasperatedly paused and told us he had a phone number for social services that we could call and talk to someone who could help us with our denial. This was insulting. We then asked him, “What would you do if this was your mother,” but he did not answer. The next couple of visits, we didn’t speak in the examination room and let all verbalizations come from our relative. Soon after, she too was regarded as being “in denial.”
“You’re Going to Die”
Inserted somewhere within his monthly assessment, the doctor never forgot to reassure us that the cancer was terminal and always stated, “You’re going to die.” Your tumor markers have gone done, but “you’re going to die.” You are fortunate not to suffer from the usual symptoms of chemo, but “you’re going to die” and my personal favorite, “We can try the new chemo, but “you’re going to die.” A person can only take so much, prompting us to request that he stop saying those disturbing words every single time we saw him. Once again, we were deemed “still in denial.”
Durable Power of Attorneys Can Be Challenged
When you fill out a durable Power of Attorney, it is meant to have your wishes carried out pertaining to your health and medical treatment if you are unable to make decisions on your own. You appoint an advocate, as well as a successor to the advocate. The papers also state what you do and don’t want done medically, such as tube feedings and resuscitation. We thought that since our relative had filled out these papers, no problems would arise, but medical employees, who doubted her desire to live under her current medical conditions, constantly challenged her Power of Attorney papers.
As stated before, we had gathered her complete history of medical records and physician notations. It was quite easy to do. Our relative signed a waiver and we took this form to the Records Department and filled out an additional request sheet. In a matter of days, we picked up the copies. The stack of papers felt like they weighed 10 pounds, taking several trees to present the data. While skimming through the jargon, we learned that nurses not only evaluate the patient’s condition, but also have sections for noting the family disposition of family members. At times, we were described as “combative,” “despondent,” and “tearful.” Sometimes we were “quiet, “full of sorrow” or “hopeful.” We also learned that doctors were planning on challenging the durable Power of Attorney. They wanted to bring the case before an ethics board. Unfortunately, our relative did not live long enough for the recommendation to be carried out.