My perception of hospice is summed up my friend’s response when I told her that I spent two days in hospice care, “Oh, um…, that must be sad.” As someone from a background where it is valued not to tell the patient their real prognosis, I have never talked about hospice or death even before my grandma died last year. I wondered how hospice could help people in their last days and not be something morbid.
The first thing that I learned was that hospice is designed to help people to go through the last days of their life. The goal is never to promote “giving up” or even suggest that these doctors and nurses have given up on these patients. Rather, it is helping family and the patient to go through the last days with dignity. One of the hospice nurses gave me a very good article called “Letting Go” by Atul Gawande that summed what I experienced. He said that with the technologies we have, we can really lose the sense of what is really important in the last days for the patients. Although death is certain, but the time at which it happens is not. He raised the question of would the patient want to pass away having everything (meaning invasive things) done to him/her to prolong their life, but not giving him/her the chance to say his/her last words or make resolutions? Putting dying in this perspective, I think that it would be more humane to let people make those resolutions, give their last words, and have someone guide their loved ones through the inevitable grieving process. As my hospice nurse said, death is never good, but they are here to make the dying process not as traumatic as it would otherwise be.
Let me give an example, for one of the families that we visited, the wife was just so grateful that the nurse came by to see the patient. She wanted the best care for her husband, but felt inadequate in her care for him. The man had been a respected fireman in his life. He was so organized and conscious of his image that he would feel embarrassed when we burped his ostomy bag (a bag to collect stool when someone has to have their bowels taken out). We heard that he used to pack his ostomy contents in diapers and seal them in quart-size zip-lock bags just so that it would not bother others. He had a meticulous calendar by which he recorded all the family birthdays, and his own medication regimen. His medications were packed away neatly in a lunch bag, and his wife reports that he gave specific instructions of “don’t mess it up” even if he could not manage his medications anymore. Whenever he was awake, he would joke with us, and I could see that he never lost his spunk. After all, we were in his house. Although he was a patient, he was also a man with pride, and you could tell that he would never let that go.
But the truth of the fact that he was a man wasting away from the cancer that mercilessly struck him. He had a loving family that wanted the best for him. I witness how the nurse took time not only to help the patient to stay mentally alert and out of terrible pain, but also she also took the time to talk and comfort the family. The wife received much support in terms of learning and building up her confidence to care for her husband. She began to know what to expect, so that she would not be so distraught. She had been sleep deprived trying to stay up during the nights because she didn’t want to miss his last moment. But with the comfort of the nurse, she accepted overnight nursing help and was reassured that the best way is for her to be mentally and physically ready when that time comes.
What I took away from the experience was that this man would not have wanted to be tied to tubes inside an intensive care unit, and hospice provided him with care that allowed him to be where he was the most comfortable, in his house where he is still its owner. Also, hospice care also helped his wife and family to face what is about to come. It is not forcing that reality on these people, but it is helping them to come to terms and accept what is going on now and cherish the time that they have. Even research has shown that people in hospice care actually lived a few months longer than those who underwent intensive and invasive treatments. The alternative would be much more devastating given the prognosis of this man and his disease.
Yet, as a society, we resist this type of care in the belief that fighting for life with all that we have is the best. I think that the next steps in my future career is to help people to see that hospice is not a “waiting for death” experience, but too see it as a valuable time that we cannot lose to give people good and dignified care.
Works
Cited
Gawande, Atul. “Letting Go.” The New Yorker. August 2, 2010: 36-49. Print.
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