[Editor’s Note: Cathy Ludlum submitted this response to the IOM Committee’s online survey on Oct. 31, before the Nov. 1 deadline, so this is a belated sharing of her excellent input. Let’s hope they pay attention as they prepare their final report that is due in 2014.]
Question: If you are an individual living with a serious progressive illness or condition, or a loved one of an individual please describe your experiences receiving care. . . .
I am an individual in my 50s living with a serious and progressive condition called spinal muscular atrophy (SMA). Although at this moment I am not “likely approaching death,” my survival has been in doubt at times, and without the skilled support of the people around me (whom I have trained in how to meet my needs), I would not live for long.
People with disabilities like myself have a great deal of knowledge about adapting to change and quality of life… knowledge that the medical community and others with serious and/or terminal conditions might benefit from. Thank you for inviting us to speak to you.
I had near-fatal pneumonias at ages 12 and 14. The second one, especially, taught me several important lessons:
1. Whenever doctors do not know what else to do, they start talking about a tracheotomy. Sometimes this is appropriate, but in my case alternative approaches have been effective. One was suggested by a medical resident, and another was brought forward by me. I have never had a tracheotomy, and my breathing is good considering that I have SMA. I think this goes to show that practitioners need to look beyond the obvious and to use less invasive techniques whenever possible.
2. I avoided getting a tracheotomy at 14 (and most likely dying anyway) because a young resident realized that deep suctioning every two hours was irritating my lungs and making my pneumonia worse. He ordered that suctioning be stopped and a direct pressure technique called assisted coughing be used instead. I immediately started to improve. I have used assisted coughing ever since. I believe it is one reason why I have lived so long when many of my SMA peers died in their teens or twenties.
Since the age of 14, every time I have been in the hospital, I have had to make sure I am not deep suctioned and that I have access to assisted coughing. When medical personnel listen to my understanding of my own body and we work together as a team, things go well. When they act as if they know everything and I know nothing, things go badly.
Because of my disability, I am small in stature and have only the limited use of three fingers and everything above the neck (except that my swallow is poor). For the last 16 years I have received all of my nutrition through a feeding tube, and for the last 13 years I have used a bipap to support my breathing when I am asleep.
Based my appearance, functional status, and use of life-sustaining technology, people tend to assume that my life is hopeless and unbearable; when I tell them I have my own home, a college degree, meaningful work, and typical social relationships, and that I hire and train all of my support staff, they don’t always believe me. What’s worse, assisted coughing is not a universally accepted practice, and if I can’t get it when I need it, I will die
I know now that I must have an advocate with me at all times when I am hospitalized, both to verify who I really am (as opposed to what I look like), and to secretly do assisted coughing with me.
As far as talking with my loved ones about my health care decisions, I have made it clear that I will be fighting until the end. I have said so through my advance directive, and in conversations with the people I appointed to be my health care representatives. I have already survived many battles that looked unwinnable. In the community of people with severe physical disabilities, death shows up frequently and living a long time is the exception to the rule. A good attitude certainly helps. Part of that is feeling that I still contribute something of value to the people around me and to the society.
While I do not like change, I have lived through many transitions as my physical abilities have diminished. Strangely, the weaker my body becomes, the stronger I grow emotionally, and the more confident I feel about facing the next challenge. I am not afraid of using more technology should it become necessary. Most importantly, I will continue to nurture my relationships. Whether you have a disability or not, interdependence is the key to a secure and fulfilling life.
As for my spiritual needs, I feel blessed to have been given a unique perspective on life and the ability to use my journey to benefit others. One day the journey will end, but not because I gave up, and not because the medical profession gave up on me. I have a wonderful life, and I expect to have a good death.
Question: What do you see as the biggest barriers to care (for individuals with serious progressive illness or condition) that is appropriate and easy to access?
1. Lack of training about disability culture and lifestyle for medical students, student nurses, and others preparing to join the healthcare field, as well as experienced practitioners. Stereotypes that people with severe and progressive disabilities are suffering and/or on the verge of death make it more likely that practitioners will suggest comfort care when aggressive treatment would be offered to a nondisabled patient in a similar situation.
2. Changes in the healthcare system in recent years have made it increasingly difficult for medical practitioners to get to know their patients. For people with severe and progressive conditions, this is truly dangerous. Appearances are are often deceiving, and medical issues may be complex; a 10-minute visit often accomplishes little.
3. The movements to promote physician assisted suicide and Physicians Orders for Life-Sustaining Treatment (POLST) carry specific dangers for people with severe and progressive disabilities. Both movements feed off of the fears held by physicians and the public about losing independence and control over one’s life. Making it easier for people to die distracts us from the very real problems of poverty, isolation, shame about our bodies, feelings of being a burden, and the lack of meaning many struggle with in our modern age.
4. Expressions such as “artificial nutrition and hydration” cloud people’s decisionmaking process. I have been using a feeding tube for many years, and I promise you there is nothing artificial about what I eat. The calories and the nutrients are there, and because of this I am able to continue living my very real life. It would be more accurate to say “tube-administered nutrition and hydration,” and I encourage you to start doing so. We do not call diabetic medicine “artificial insulin,” and we do not call hearing aids “artificial hearing.” Biases in our language cause unnecessary fear and can cost people their lives.
5. Alternative treatments such as assisted coughing need to be explored, endorsed, and provided in institutional settings such as hospitals and nursing facilities. Just as massage, Reiki, and chiropractic treatments are gaining acceptance in the world of Western medicine, so should other treatments that have lifesaving results, promote healing, or alleviate symptoms.
Question: What three changes in the U.S. health care system could improve care of individuals with serious progressive illness?
1. Require mandatory training about life and culture of disability for all who are preparing to join the healthcare field, as well as those who are already practicing. Understanding how we live will reduce the perception that we are just hanging around waiting to die. Some efforts have been made to provide this type of training, but these have been small and limited. Everyone in the healthcare system needs to hear this message.
2. Return the human touch to the field of medicine. Make it possible for practitioners to spend a reasonable amount of time getting to know their patients during office visits and dealing with their concerns through the years. A doctor who has taken the time to listen to an individual, and become familiar with her his or her patterns will be more effective in treating problems than a hospitalist who comes on the scene during a crisis.
3. Renounce physician assisted suicide as bad medicine, and take a second look at Physicians Orders for Life-Sustaining Treatment (POLST). Regarding physician assisted suicide, people already have access to advance directives, the right to refuse treatment or have it withdrawn, and quality palliative care. Some patients may still choose to end their lives by their own hand, but let’s not have doctors endorsing the practice or participating in it. POLST attempts to solve the problem of overtreatment, but this is premature when so many in the disability community and other devalued groups are are typically undertreated. Slow down the process and listen to the perspectives of people who already use life-sustaining medical technology. Create a tool that ensures that people’s decisions about treatment are made using full and unbiased information, free from coercion, and stable over time. Otherwise the “choice” is meaningless and people will lose their lives against their will. – Cathy Ludlum