Soon after I began working at Camden Clark Hospice in Parkersburg, WV, I became the primary nurse for our first patient who was diagnosed with amyotrophic lateral sclerosis (ALS). Because I had never before cared for a person with this disease, I knew I needed to seek guidance.
I contacted St. Christopher's Hospice in London, the first modern-day hospice, founded in 1967 by Dame Cicely Saunders. To my surprise, Medical Director Dr Nigel Sykes promptly responded to my letter. He answered my questions about ALS and encouraged me to visit St. Christopher's if I ever came to England. In addition, he directed me to the nearby King's College, which holds weekly clinics for patients with motor neuron diseases (MNDs) such as ALS.
I never imagined that I would actually make the trip to London. In January 2003, however, my husband gave me a plane ticket for my birthday. At the end of March, 2 weeks after the beginning of the war in Iraq, I departed on an 8-day trip hoping to learn as much as I could from the caregivers at St. Christopher's.
At the hospice, I helped care for the 11 patients on the Alex Ward. Twice a day, I attended staff meetings in which the doctors, nurses, and social workers discussed the best ways to care for the sick and their families. I was impressed by the knowledge, dedication, and compassion of the staff. They genuinely respected each person for whom they cared.
By chance, I met Dame Cicely Saunders, now in her mid-80s, who remains active in the hospice and palliative care program at St. Christopher's. She cut through my excited rambling to ask pointed questions. What were the hospices in West Virginia doing to care for their patients? Did Camden Clark share its knowledge with other hospices? Dame Cicely emphasized the importance of exchanging information with others in the field.
I learned a great deal about ALS at the MND Research Center at King's College as well. The staff specified the progress that they have made over the last 10 years. Though funds are often scarce, they have identified the proteins particular to MND patients, a vital step in finding a cure. They have also developed devices to enable patients to communicate and medications to ease their pain.
I returned to London for a second visit in October 2003. I found the second trip even more meaningful than the first, because I could concentrate more on the mission and less on the novelty of being in a foreign country. In February 2004, I visited the University of California in Los Angeles for a weeklong ALS clinic.
As a nurse working in end-of-life care, I try to ensure that my patients are as comfortable as possible-physically, emotionally, and spiritually. My trips to England taught me the importance of having compassion when caring for people with devastating diseases like ALS. I believe that everybody, regardless of their mental or physical acuity, is entitled to the highest quality end-of-life care-and we as providers must always be learning the best approaches to provide such care.
I am grateful to all who support me in my mission to learn. People interested in visiting St. Christopher's Hospice for a similar purpose should visit the hospice's Web site (http://www.stchristophers.org.uk/page.cfm) and contact Janet Buchan in the Education Center.