Visiting China: A Glimpse into Life as a Chinese Laryngectomee
By: Itzhak Brook, MD, MSc
Sometimes we take our own experience for granted and forget that things may not be the same in other parts of the world. I was honored to be able to visit China and get first-hand insight into the life of Chinese laryngectomees and head and neck cancer patients.
On October 9, 2018, I presented the keynote presentation, Laryngectomee Care and Life Challenges of Laryngectomees, at the 1st Annual International Ophthalmology and Otolaryngology Nursing Forum, held at the Eye & ENT Hospital of Fudan University in Shanghai China. The conference was attended by over 500 head and neck nurses, speech and language pathologists, and head and neck surgeons from all over China. I addressed the importance of early diagnosis in my lecture and encouraged the attendees to join the Head and Neck Cancer Alliance in their campaign for early detection of head and neck cancer.
My lecture also introduced the Laryngectomee Guide that was recently translated into “simple” Chinese, making it available at no charge to all of the 50,000+ laryngectomees in China. Laryngectomy is very common in China because smoking is very prevalent. Over 450 laryngectomies are performed annually at the Eye & ENT Hospital of Fudan University, which serves more than 40 million people.
My visit allowed me to become familiar with the life and challenges facing laryngectomees and other head and neck cancer patients in China. The laryngectomees cover their stoma with a locally made ornament that does not possess any filtering capability. The main method of non-laryngeal speech in China is esophageal speech. The laryngectomees I met speak fluently using this method. Electrolarynx use is uncommon in China and tracheoesophageal speech has not yet been introduced to the country. However, currently, there are a couple of clinical trials in Beijing that evaluate its use. The main reason esophageal speech is so common is that the cost of voice prosthesis installation and maintenance is too high for the government to support. Since there is no government sponsored medical insurance (such as Medicare) in China, patients are ultimately responsible for their medical bills. Those who have medical insurance are responsible for co-payments, which may be high. Because of the high cost of medical care many patients choose not to seek medical care and end up suffering in silence. This is truly a human tragedy. The laryngectomees I met were intrigued by my tracheoesophageal speech and some were looking forward to the day when this method of speaking will also be available in China.
Laryngectomees in China face challenges similar to those commonly seen in other countries. They are often discriminated against in their workplaces, deal with depression, and experience isolation. However, the Chinese traditions of respect for the elderly and infirm and strong family ties are of great help. There are voice clubs in all of the major cities that provide emotional and practical support. They are usually located at medical centers, are run by the laryngectomees, and are supported by social workers, speech and language pathologists, and head and neck surgeons.
I had the privilege of presenting a lecture to the voice club of Shanghai, which met at the Eye & ENT Hospital. The voice club is very active, and its members meet once a week. At the opening of their meeting, a group of six laryngectomees sang a cheerful song about the beauty of life. They all wore green coats, and following their meeting, a group of them visited hospitalized laryngectomees. It was a unique experience to join those wonderful, optimistic club members. It was amazing to watch them lift the patients’ spirits and cheerfully encourage them to look forward to their future. They answered their questions and invited them to join their voice club. Members of the Shanghai club routinely travel all over China to meet other local voice clubs, striving to convey to them a spirit of optimism and hope.
My visit to China gave me an insight to the largest group of laryngectomees in the world. It is my hope that the Chinese translation of the Laryngectomee Guide will help them get better care and improve their quality of life.