[Editor’s Note: In my full written comments on POLST submitted to the IOM Committee in July, I mentioned, “One advocate I know suggested that we need a disability educational campaign called ‘We Love Our Tubes’ or ‘Tube Pride.’” That advocate was John Kelly. Here, he tells more of his story to the Committee, responding to Question 1 of the online survey that closed last Friday. John’s response is also available on the Public Policy section of our website here. – Diane]
I am a 55-year-old white man who is a quadriplegic based on a spinal cord injury in 1984. The level of my injury was at the fourth cervical level, resulting in near total paralysis below my shoulders. My breathing ability survived the injury, and after diaphragmatic strengthening, I have breathed without assistance for the last 30 years. I drive a powered wheelchair with a sip/puff tube, live in the community with assistants I hire and manage myself, and work part-time as a disability rights advocate. I am a writer and community leader in the disability community.
First, I never heard the word “death” uttered around me in the immediate time period after my injury. No one mentioned the possibility of donating my organs, no one said the words “it might be for the best,” no one queried me regarding my “choice” to live or die. The nurses at the rehabilitation hospital were gung ho on getting us all up into our wheelchairs and maximizing our abilities. We spinal cord injured people learned about “independent living” and how the main impediments to us doing what we wanted to do were architectural and prejudicial, not biological. I’m afraid that if I were injured today, I would be carefully consulted as to whether I really wanted to stay alive or not.
Based on my high level of spinal cord injury, I am quite susceptible to autonomic dysreflexia, a life-threatening condition in which blood pressure skyrockets to dangerous levels because of a pain or irritation below the lesion site. I also have a suprapubic tube inserted directly into my bladder.
I have had a wide range of experiences with medical professionals, but they always are a cause of high anxiety. I can simply not trust that a healthcare professional will listen to me, when I tell them what my body needs. The level of ignorance is so high, unfortunately, and the level of arrogance equally high, that I have been frequently endangered or simply ignored in a hospital setting.
When I had only had my suprapubic tube for a short time, the tube blocked so I went to the emergency room. The two young Harvard-trained doctors must have asked me four times about what kind of surgically-altered bladder I had. I was reduced to repeating, over and over, “I have a normal human bladder.” They were so ignorant about how to insert a new catheter that it fell out in the shower the next morning. Now one of my personal care assistance changes it without problem.
A few years ago I was outside on a hot summer day. I got overheated and lost so much strength that I was simply begging people for cold water. A security guard called 911, and while we waited, I used all my mental energy to form my story. I laid it out as carefully as I could, and when the EMT arrived, I said “Sir, I have a spinal cord injury and am overheated. I just need cold water.” The EMTs were outraged that I was telling them what I needed, rebuked me, would not give me water, and would only transport me to the hospital.
At the hospital, I told everyone who came over that I was overheated and desperately needed cold water. Over and over I was either ignored or rebuked. I still could not get my ice water. They insisted on putting a hospital gown on me as I felt like I was about to explode. A nurse reprimanded me as she started giving me an IV of saline, with a diagnosis of dehydration. The fluid only pushed up my blood pressure, caused by my being on my back. (I take midodrine).
I talk with other severely disabled people, we all experience stark terror in a hospital. So often, staff think that our lives are pathetic or pitiful. Some nurses ignore our call requests. We swap stories of the horrors, but we all agree that we must be as sweet and compliant as humanly possible in order to hope for decent treatment.
My medical provider is an innovator in home-based care for adults with severe disabilities. The practice has been in the business 30 years and is now expanding its services to include all disabled adults with eligibility for both Medicaid and Medicare. This is a Onecare demonstration project under the ACA. The medical group has provided me excellent care.
Three months ago, my nurse brought me the Massachusetts MOLST form, with its preferences for certain treatments in extremis. She had been told that they were to complete these forms with every disabled person she follows. I found the form oppressive, and have never in my life seen a questionnaire in which “No” was on the left and “Yes” was on the right. I thought these forms were for people near death.
I asked her what she had been instructed about the form, and whether there were any materials for me. A few minutes earlier, she had given me the notification form for my annual flu shot. But nothing to accompany the MOLST form. She didn’t receive any training, either. And while I was confident filling out the form, others may not be. I believe people should receive notice that they will be hit with this kind of form, and be able to have another person present when the discussion happens.
I know people in my community who have been badgered about having a DNR. We hear stories in the media about disabled children having DNRs slapped on them. We have friends who use ventilators, and don’t think that they are extreme interventions. Two of my best friends – a writer and a playwright – used ventilators for years.
The characterization of a feeding tube as “artificial” is insulting. I am very happy with my suprapubic tube, a simple rubber catheter that takes care of my urological needs very well. My writer friend also got a feeding tube and she loved it for keeping her alive. The food that went into it was cooked with just as much love as anything someone else would put in their mouth.
One of my friends works for a man with a head injury. When the nurse approached him with the MOLST form, he became extremely agitated, as this kind of harassment has gone on for years. He says over and over that he wants to stay alive, and gets angry when questioned on that decision.
Right now I am working with a group to negotiate improvements at Boston Medical Center, the city hospital of Boston. Here, like all across the country, disabled people can’t access diagnostic equipment, can’t get onto exam tables, can’t get weighed, can’t even be equipped with a device to call the nurse. We are terrified of hospitals, and it should be the highest priority of the Institute of Medicine to change that fact.
John B. Kelly