Thinking About Cancer Patient Safety
October 20, 2018
By Leah Taylor
Today’s edition of A Day in the Life of a Stage IV Breast Cancer Patient is me thinking about patient safety and three stories about this issue rather than the usual timeline. I saw a question asked by a cyber friend wondering what the “worst” thing that has happened since “my” breast cancer diagnosis. I found myself thinking of an issue that I discovered early on in my breast cancer experience, patient safety. It’s something commonly dealt with but I have not seen discussed openly. It’s a fact that a cancer diagnosis opens the patient up to being victimized or abused on many levels. We all have individuals in our lives who are narcissists or have personality disorders of different sorts. We have people in our lives that have substance abuse issues. We all have people in our lives that test our personal boundaries on a regular basis and we generally have a set protective mechanisms in place to deal with people who would cross those boundaries with little thought. These issues become magnified when a cancer patient becomes preoccupied with dealing with serious illness and has little energy left for dealing with any poorly functioning individuals in their lives.
The first time I noticed this issue was about 3 months into my first diagnosis. I was sitting in my assigned chemo chair with my headphones on and my kindle fired up minding my own business. Suddenly, in the chair next to me, I noticed a small commotion and turned my music down leaving on my headphones. In that chair was an older woman, I will call her Betty, who was about 75 or 80, getting treatment. Sitting in one of the visitor’s chairs across from Betty was a woman I vaguely knew, (she dated another acquaintance for a few months about a year prior to this incident) I will call her Denise. Denise was apparently Betty’s daughter. Denise was telling her mother that she was tired of waiting on her and she thought that Betty wasn’t deserving of all the attention she was getting due to her cancer. Yes, to my horror, Denise was berating her frail, elderly, very ill mother in one of the most vulnerable places a person can have to sit.
Thankfully, a nurse came running over and asked to speak to Denise privately. Denise did not return from that conversation. Betty’s sister appeared within the hour to assist her, thankfully.
My next treatment, I noticed Betty getting seated a few chairs from me and her sister was again assisting her. About an hour or so into her treatment, Denise appeared. She again started berating her mother. At this point, Denise’s aunt quietly told Denise she was no longer allowed to come to the cancer center with her mother. And, if Denise persisted, law enforcement would be called. Denise stomped out, and that was the last I ever saw of her. Needless to say, I was stunned to witness a fifty something year old woman treat her very ill mother in such a way.
My friend Debbie’s story is especially heartbreaking. Debbie was diagnosed with gallbladder cancer about the time of my first breast cancer diagnosis. She and her husband were dealing with a many years long substance abuse issue with their oldest son. Sadly, a week before Debbie died, her son got into her drug box handled by hospice. He took the entire contents then disappeared, leaving her with no pain medication. She was taken, screaming, 45 miles to the University of Kentucky to get her pain back under control because her addicted son could not put his issues aside long enough to let his mother die in peace. Thinking of this situation horrifies and sickens me. I wouldn’t wish this on my worst enemy.
My third story is my own experience. I was in a long-term relationship with a man, I will call him Richard, who had a life-long alcohol addiction that seemed to be under control. Little did I know at the time, that the alcohol was covering up a significant personality disorder as well.
During my first breast cancer treatment, life went on as usual. I was able to cook, clean, take myself to treatment, and function relatively normally considering the circumstances. I did not expect or ask any help from him. On the days I wasn’t feeling well, we ordered out food instead of me cooking as Richard was above such duties.
Things changed after my second breast cancer diagnosis. Ten days after this diagnosis and subsequent double mastectomy, I came down with a life-threatening post-operative infection. I was admitted to the University of Kentucky’s intensive care unit in short order. On the morning of the second day, I was transferred to a regular room. On the evening of that second day of hospitalization, Richard had a massive melt down that made him look like a petulant child, not a 58-year-old man. I noticed he was becoming more and more agitated but blamed it on lack of sleep, being out of his home environment, and stress about my situation. All of the sudden, he became very loud and belligerent. He wasn’t happy with my roommate who had obvious dementia. He wasn’t happy with the accommodations for him. He wasn’t happy about anything. I finally convinced him to go for a walk.
Immediately after Richard left my room, a female nurse and female physician entered my room and said they had called security and Richard would be escorted out of the hospital or arrested. They asked over and over again if I had been assaulted as I was obviously upset. I did some very fast talking telling them I was fine, he did not assault me, and he was just very stressed. After Richard returned to my room, I told him he had two choices, go home or settle down or he would be exiting in hand cuffs. Magically, his behavior changed.
I spent the following six months continuing to battle the infection. During this time, my ability to keep things going at home like before this second diagnosis was becoming more and more difficult. A short hospitalization found round two of this bizarre and unacceptable behavior from Richard. What set him off this time was a delayed discharge that was taking too much time. He once again became loud. He was demanding that I insist they “hurry up”. I sat in a corner chair this time and put my head down and decided to let the situation play out however it would. I refused to cover for him this time. I had asked repeatedly for his family to intervene after his first episode with no luck. I had discussed this bizarre behavior with his sister, his brothers, and his children with none willing to help figure out what was happening. I have since learned they were all aware of what was causing his bizarre behavior but refused to tell me and refused to confront him. Oddly, this second time, the nursing staff did not seem as concerned about my well-being. This was a smaller regional hospital with much more limited staffing. And, I am sure my demeanor kept the drama from escalating to the level of involving law enforcement.
Six days after this last episode of very inappropriate behavior, I left. I left my things to be gathered by my friends and family at a later time. I knew my very life depended on my separation from this bizarre and completely inappropriate behavior. And, his behavior after I left indicated either a severe mental illness was manifesting from the stress of my illness or his substance abuse issues stretched far beyond alcohol or both. I learned after the fact that it was both. I had been told stories about his use of hard drugs that I did not believe. Obviously, my trust was misplaced.
Richards behavior after I left has sadly continued to deteriorate. In the aftermath, I am grateful I got out of that situation with my life. I had no doubt that Richard’s mental health issues and substance abuse issues were only going to get worse. And, my prognostications proved correct after a near death drunk driving accident and other inappropriate behaviors.
To be honest, I should have ended the relationship long before I did. The take away from my experience is this: I am trained, with a degree that indicates I should not have been a victim of this type of behavior by someone with these types of issues. I was allowing inappropriate behavior in a relationship long before cancer. Because of my denial, things were fine until the cancer forced the cracks in our relationship to blow wide open. The main crack being a serious substance abuse issue that obviously went far beyond alcohol that I was either oblivious to or refused to see. Add the substance abuse to a personality disorder and disaster is certain with a stressor like cancer. Dumb me.
When our support teams watched these incidents go down, they were very supportive. Thankfully. They insisted that Denise not accompany her daughter to treatment with the threat of law enforcement involvement. Debbie’s team hospitalized her to get her stable enough to go home to die. Debbie’s son disappeared until after she passed away. My team offered social support on many levels to me knowing I left a very dangerous situation that had escalated to life threatening.
My health care team has shared with me that my situation, Debbie’s, and Betty’s, are not uncommon in the cancer community. I was stunned to learn that there are cancer patients that are threatened and abused by their caregivers. There are cancer patients that endure family and friends stealing their pain medications. There are cancer patients that live with individuals that have mental health issues that become more prevalent under stress, leaving the patient without the necessary support needed to get through treatment. And, sadly, there are patients that endure physical abuse because they can’t defend themselves. While I can’t state percentages for these issues, I am told that it is much higher than most people would realize.
I now, personally and professionally, recommend any patient or caregiver that contacts me for my input to seek counseling. This counseling can be done by a mental health counselor, and social worker, or even a chaplain. I now, when time permits, ask my care team members how they support their other patients to make sure their patients are safe. I now, write about this rarely discussed problem.
Certainly, any of these stories can be told independently aside from the cancer issue. The cancer diagnosis simply makes these situations more volatile. Conversely, supporting a cancer patient in a professional, caregiving, and personal capacity helps lower stress levels to manageable limits. By lowering stress levels, safety issues are less of a concern.
It is my hope that by telling Ms. Betty’ story of enduring elder abuse, it makes people aware. It is my hope by sharing my friend Debbie’s story of her son stealing her medication, it makes people aware. And by telling my story of domestic abuse, I hope to make people more aware of how vulnerable a cancer diagnosis can make a patient.
If you are a cancer patient, are you surrounding yourself with a competent team to whom you can relay any potential safety issues? If you are a caregiver, are you protecting your loved one from the many perils of abuse now that they are especially vulnerable? If you are a medical professional, are you cultivating a relationship that makes your patient feel safe enough to share potential safety issues?
If you are a patient in a
n unsafe situation, please contact the appropriate authorities and get the necessary help to be safe.
Thanks for your time and thank you for allowing me to discuss this difficult subject.