- The Less, the Better: One Patient’s Journey with VSED
I was working as a hospice social worker for two years at the time, and had seen many patients stop eating along the course of their disease progression. However, I had one gentleman who decided to voluntarily stop eating, in order to hasten his own death. Bernard was a well–educated man, quietly reserved, yet conversational and introspective. He was a successful businessman, but his personal life was plagued with many regrets. Bernard was twice widowed, and he deeply [End Page 78] missed his second wife. He was admitted into a facility, originally for rehabilitation, but was unable to tolerate it due to consistent, persistent diarrhea that had plagued him for several months. Bernard had colon cancer that was previously treated with surgery and radiation. Over time, the radiation left scar tissue and other complications that caused him to have intractable diarrhea whenever he ate even a small amount of food. The diarrhea lessened as his intake of food lessened. He was not a candidate for a feeding tube, he did not desire to have one, and his living will was in place. The cancer itself was not an imminent threat to his life, but would eventually lead to death. The main issue was that the diarrhea was so uncomfortable and distressing to him that he preferred to voluntarily stop eating, with the full knowledge that it would take his life sooner than the cancer.
I supported Bernard in his decision to stop eating. I met with him weekly over the course of the two and a half months that he lived on hospice. Ethically, it was the conflict between the principles of autonomy, beneficence, and non–maleficence. I supported his autonomy in choosing the benefit of physical comfort: lessening the diarrhea was beneficial to his physical and emotional well–being. However, he knew that his choice would be harmful in that it would hasten his death. Bernard valued his autonomy and strongly desired comfort and relief from his symptoms. He was less concerned with the fact that his actions would cause harm by hastening his death.
Bernard was very close with his son Jeffrey, who lived out of state, a 2–hour plane ride away. Jeffrey was also in agreement with Bernard’s decision, but was highly anxious about the process. I provided extensive emotional support and education to Jeffrey over the phone throughout the entire time. The Hospice Agency held an ethics meeting to discuss the situation and weigh out the factors in supporting his care. Respecting Bernard’s autonomy meant not forcing, coercing, or trying to convince him that he “should” eat. Hospice provides support, education and comfort measures during a terminal process, with the patient’s goals of care as the directing force.
Bernard began his journey by refusing all meal trays that were sent to his room. I helped to advocate for him at the facility. Here again is the conflict between autonomy and beneficence. The facility at first felt obligated to provide the meal tray (beneficence), so that they would not appear to be withholding food or joining in his effort to hasten his death (non–maleficence). Bernard’s son Jeffrey was also his tireless advocate. He argued that it was more harmful to his father’s psychological state to have the food tray delivered to his room at every meal, testing the patient’s will power, and forcing him to continually refuse the food. This was stressful for Bernard and Jeffrey. After a while, the facility finally agreed and stopped sending the meal trays.
Bernard was eating only three Vienna Finger cookies per day, sucking a hard candy or lollipop now and then, drinking tea and milk at regular intervals, and basically waiting to die. Much to his surprise, with this limited, selective intake, the diarrhea stopped. Bernard became more physically comfortable than he had been in many months. He found a renewed enjoyment of life when he was not focused on the physical discomfort of his condition. He was not expecting to experience “quality” in his life during this window of time when his life was supposed to be...