Shadows and fog
The story I am going to tell in this post is true. It’s a story that has been told to me over the past several months. Certain details have been omitted, but I asked for and got permission to relate the essentials here. The essentials are accurate.
The image of the straitjacket was borrowed from the website of a medical supplier that many of us in healthcare are familiar with — the Posey Company, which makes patient restraints, as well as other non-restraining mobility equipment. I Photoshopped it slightly. There are no actual straitjackets in this story, thank goodness, only metaphorical and societal ones.
This is not a nice story. But it’s not an uncommon or even an unusual one. It has something of a happy ending, if ‘happy’ is even the right word. It represents a long, harrowing chapter in one woman’s life, and the ongoing story continues. But the end of this particular chapter would have been much better had the means not been so unconscionably wretched, inappropriate and avoidable. It is, in my opinion, a snapshot of a healthcare and social system that is sometimes dangerously crazy.
It started with breast cancer.
Bad luck and trouble
This is the prologue. Every day, women have their breasts amputated to save them from breast cancer. Some of them are young, some of them not so young. Some of them, including the woman in this story, have seen their mothers or sisters or aunts die of breast cancer. Some of them opt for immediate reconstruction, some don’t. Some of them have never had any other significant healthcare problems before. Some of them have. Some of them, including the woman in this story, have a prior history of disability and chronic pain, have no significant other or anyone at home who can help them. Some of them, like the woman in this story, have a history of depression or anxiety or bipolar disorder or physical pain or life trauma that has left its mark on their psyches. All of them are fearful and in need of compassion and competent help before and after their surgery.
This chapter started with a bilateral mastectomy and expander placement. It started without a thorough, comprehensive assessment of the patient’s health history. It started with a disingenuous and incomplete discussion of the potential post-op problems associated with this surgery. It started without addressing the patient’s psycho-social circumstances, without an honest apprehension of post-op pain or lack of mobility or lymphedema risk or possible infection or surgical complications. It started without genuine informed consent. It started, as so many of these stories do, with medical optimism, with the limited perspective of medical specialization, with a sincere, if misguided, intent to solve a medical problem and perhaps save a life from the ravages of cancer.
Before the woman in this story had her surgery, her surgeon expressed surprise that she was concerned about pain and decreased mobility afterward. He was surprised to hear that women found it painful to raise their arms after having their breasts cut off. But he did reassure her that her post-op pain would be controlled.
So, with trepidation and resolve, she had her bilateral mastectomy and expander placement. The surgery appeared to go well, but in the hospital, because she has a history of chronic pain, her post-op pain was not adequately addressed. It took complaints to hospital administration, phone calls by relatives to hospital personnel, just to get the hospital staff to give her appropriate and effective pain medication. She stayed with friends immediately after discharge. She probably didn’t stay long enough. When she got home, where she had noone to help her, she had acute pain from drains, and difficulty moving her arms in order to dress or bathe herself. Her drains had to stay in longer than usual. They hurt whenever she moved. They disrupted her sleep. She did have a competent and compassionate homecare nurse. Later, she had a homecare rehab therapist to help her move her arms again.
Along the way, during the course of her recovery, she had to be rehospitalized, several times, for local infections, systemic infections, and other complications. Eventually, her expanders had to be removed. They were just too painful, caused too many problems. Throughout all of this, it is not clear that she ever received adequate information about post-op clothing or prostheses or outpatient emotional support. None of this did much for her emotional well-being. Meanwhile, she had no car, no job, and was living on the poverty-level income of federal disabilty, one of those so-called entitlements that politicians are fond of debating. The average annual income for those receiving federal disability is less than $14,000. The national average annual wage in the U.S. for 2010 was $41,673.83.
The unbearable darkness of being
Inevitably perhaps, after several months of pain, illness, side effects, surgical complications, and poor sleep, she hit the wall. She developed insomnia. Several days in a row went by when she could not sleep at all. She felt like she was losing her mind. She just wanted her misery to end. She just wanted some relief.
So she called her counseling therapist, a woman who’d treated her effectively for several years. Her therapist agreed that she needed some immediate help. She herself wasn’t available, but she referred her to an emergency outpatient counseling clinic that the woman had received help from previously. She called a friend, who took her to the outpatient clinic.
She was not seen by the clinic counselor who knew her. She was seen by a young woman who did not know her well. This counselor felt that perhaps a brief hospitalization might help her get her medications sorted out and help her get some sleep. She agreed. She talked to her regular counselor again by phone, who also agreed and said she would call ahead and get the ball rolling. Her friend drove her to the hospital and offered to stay with her, but she felt that since there was light at the end of the tunnel now, she would be all right on her own.
She was left in a hallway in the chaotic Emergency Department. An unfriendly, unsympathetic male nurse threw a johnny at her and ordered her to change in one of the bathrooms. She was not taken to a cubicle. There were none available. Hours went by. She was not seen by a doctor. She was not assessed by anyone. Instead, the male nurse ordered her to sign herself in for a stay in the psychiatric ward. He told her she was not allowed to leave, even though she’d arrived there voluntarily. He told her she was considered a suicide risk. When she tried to ask questions, he hollered at her that she’d better cooperate or they would ‘deal’ with her accordingly. There was no hospital room available yet, so she would have to stay in the ER hallway until there was one. He told her that when they found her a room, she could not have her belongings, including her cell phone. In a nearby cubicle, a woman who had taken an illegal drug overdose was screaming and being restrained by several staff, including the male nurse. She began to be very frightened. She called a family member to ask that a lawyer be contacted. She called her counselor. She called the outpatient clinic that had sent her there. No one answered her questions. No one she called could come to keep her company.
More hours went by. The male nurse returned and tossed a urine cup at her and said they had to draw blood. She was still in the hallway. She tried to explain that she had a hard time with needles and needed to lie down. He again threatened that she’d better cooperate. By now, she was terrified. Finally, another female nurse came back with the male nurse to draw the blood. She again explained to them as calmly as she could that she really needed to lie down, because she often fainted when her blood was drawn. Finally, a curtained partition was found and a gurney moved into the hallway so that she could lie on. No one would explain why they needed urine or blood samples.
Several hours after she arrived, she was admitted to a room in the psych ward. Her belongings were taken away from her and stored. She was by now exhausted, traumatized, and felt a hundred times worse now than she did before she called her counselor earlier in the day. She was finally seen by a doctor, who was, at least, reasonable and reassuring. He reviewed her meds, made some recommendations and much-needed changes. She had been on one medication, prescribed for various diagnoses from seizures to migraines to bipolar disorder, that is known to interact adversely with several other meds and cause numerous side effects. He discontinued it and prescribed something much gentler and more effective. She was able to sleep at last.
She was kept on this psych unit for six days. She received no individual counseling. She was not allowed to call anyone. There were no activities, no books, only one ‘group’ therapy session each day. There was nothing to do but watch television in a group recreation room, which was occupied by patients who displayed much more serious psychiatric symptoms. By comparison, despite her crazy-making ER experience, she realized she felt sane, but no thanks to the atmosphere or amenities. She was assured that she would be discharged soon. One of the unit nurses apologized for the lack of attention, explaining that they were chronically short-staffed, that this was not how they used to operate.
With nothing else to do, she spent her time walking the halls, in a johnny and hospital slippers. Her feet began to hurt from walking on the concrete, linoleum-covered floors, but she kept walking. That, and the new medications she was on, at least allowed her to sleep every night. Finally, she was allowed to go home.
Broke and betrayed
After she got home, she met with her original counselor. She described her hospital experience. She assured her counselor that she would be filing a complaint against the hospital. She told her counselor that she would never have agreed to go at all had she known how badly she would be treated, especially in the emergency department. She had managed already to talk to a hospital staff member who admitted that the male nurse who had terrorized her had been reprimanded for inappropriate behavior in the past. He would now be warned that he would lose his job if there were any further complaints. Her counselor was horrified, and admitted that she had no idea that she would be subjected to such treatment. She accepted her counselor’s apology, but also said that her ignorance was not a good excuse, that she should have known what would happen, that she should have been acquainted with the hospital’s apparent standard operating procedure, that she should have, at least, been able to warn her that she was going to be considered a suicide risk, that her rights were going to be taken away as soon as she set foot in the door. She told her that she could no longer trust her advice after this, that their therapeutic relationship was damaged irreparably.
How is it that arguably the most sophisticated healthcare system in the world allowed this to happen? How could it not simply help this woman get to sleep? How is it that it could not prevent this woman from falling down the rabbit hole? And when she did, how is it that, instead of adjusting her medications in a friendly, calm doctor’s office, they sent her to hell on earth? I don’t know the answers to these questions. But I do know that the insanity of this experience was not hers. When I was doing research for this post, I came upon this eloquent essay by author John Shirley about the hideous inadequacies of healthcare for the mentally ill, called The Mental State of the Union. In the essay, Shirley asks, “What if, as a society, we’re far crazier than we realize?” Indeed.
Remarkably, the woman in this story is still sleeping through the night so far. That’s the good news, the ‘happy’ ending. And her path reports showed ‘no evidence of disease.’ Her medications are working better. She still has pain and scars from her mastectomy, but she has no plans to attempt reconstruction. She is trying to scrape together the money to buy a car, so that maybe she can find a part-time job. She also has to find another place to live. She is still poor.
It started with breast cancer.
For more help and information about psychological disorders, appropriate treatment, and patient advocacy, please visit the National Alliance on Mental Illness.