Many years ago, I first met the son and daughter-in-law of my patient while she was taking a nap. As I explained hospice services to them, they had only one request of me: I was not to tell the patient, Eve, that I was from hospice. This is not an unusual request of hospice staff. Eve’s family was very concerned that if she knew she was receiving hospice care, she would give up her battle with lung disease. Eve’s doctor had agreed to this plan and had kept the severity of the disease from her. I gently asked whether they thought that Eve was already aware of her decline; I suggested that by not telling her the truth they were denying each other an opportunity to do or say what they may want or need to at this very important time. They refused to even discuss the option. I obliged their wishes with the caveat that if Eve asked me, I would not lie to her. They agreed.
Eve was in the last stages of her battle with COPD (chronic obstructive pulmonary disease) and was becoming frailer by the day. After about two weeks of “silent hospice” care, she whispered to me from her bed that she knew she was dying and that was alright but I shouldn’t tell her children as they would not be able to handle the information. The sadness of the situation was overwhelming; the involved parties were trying so hard to protect each other from what they perceived as fragility and pain that in reality they were denying each other the opportunity to spend these last days openly sharing their emotions.
How much information should be shared with a patient, and who makes that decision? This question raises many ethical concerns, and can be debated from many sides. But in plainest terms, the question is this: Unless the individual has previously requested not to be told if they have a life-limiting disease, does anyone has the right to keep such information from them? Does a family member, an intimate friend, or a trusted health care professional have the right to withhold such information because they believe the individual would not be able to manage the information? On the other hand, if an individual or their family does not want to know a diagnosis, must they have to be told?
Most individuals want to know their diagnosis and options for care. The vast majority, 94% in one study, stated they would want to know everything they could about their condition. Many already suspect they are seriously ill before the diagnosis is confirmed, and many feel a sense of relief once the diagnosis is made. Their focus now can shift to treatment choices and they need to be able to make informed decisions regarding their health care.
Silence can be harmful to relationships; individuals may feel their condition is worse that it is, or and the information may be accidently disclosed by those not in the “cone of silence.” That may leave the individual feeling angry and betrayed by those who were trying to protect them.
On the other hand, there is no legal mandate in this country that states someone must be told when they do not wish to know regarding their health care. Each individual should have the right to determine how much information they do and do not want to know from their health care provider. They should also inform their provider of their decision and whom they wish to be informed if they desire the information be shared. These questions should be asked early in the patient-doctor relationship; the appropriate consent forms signed; and individuals involved informed of these decisions. The health care professional does not have the right to break a patient’s trust; the health care professional must subordinate his own beliefs and preferences to the expressed desires of the patient.
No comments:
Post a Comment