In regards to ethics, nurses have an obligation to fulfill the principles of beneficence, benevolence and non-maleficence. Not only are we required to do no harm (non-maleficence) but we are required to do good for our patients (beneficence). Yet our code of ethics goes beyond this. We are also required to fulfill the principle of benevolence which means providing aid when we know a patient needs assistance. When nurses help family members prepare documents naming a healthcare proxy or medical directive it can be difficult to do no harm which can occur if we seem to be discouraging of a prohibition of extraordinary measure to prolong life. As a medical professional who has faith in medical technology, nurses may feel that since no one knows the future failing to act on behalf of a patient with a medical need (benevolence) thereby doing good (beneficence), may clash with a nurses ethical standards. This is particularly hard when helping a family member prepare documents that will include decisions for end of life dilemmas should they be incapable of making informed decisions on their own. As nurses we are also required to respect the personal cultural beliefs of our patients. With family members who have a strong cultural belief system, helping them appoint a healthcare proxy or create an advanced medical directive while respecting their cultural beliefs, is not always easy. This is particularly true when the relatives are first generation Americans while the person helping them is second generation American and may have become more acculturated.
Although I consider myself an adult I am still the child of my parents and no child ever wants to think about a time their parents may no longer be able to make their own medical decisions. I went through this recently with a friend of mine who had lost her father several years ago and her mother had recently had a stroke and couldn’t express her wishes. I was with my friend after they took her mother to the ICU and when the physician came out to talk with family. My friend didn’t clarify that I wasn’t actually a family member. Being part of a tight knit Chinese American community, we all consider each other as relatives and have a sense of responsibility for each other. The doctor first told us that my friend’s mother could likely understand at least some of what was being said though she wasn’t able to express herself. My friend, without thinking said, “Oh, you have someone speaking to her in Mandarin,” at which point the doctor looked confused. “No,” he replied. “Why?” “Because if you don’t then it doesn’t much matter what damage has or hasn’t been done by the stroke - she is definitely not understanding you,” my friend responded.
This was only one of the cultural problems my friend faced but the bigger issue came when a social worker asked if her mother had any advanced medical directives or a healthcare proxy. For many in our community discussing death is considered taboo. For many first generation Chinese immigrants emotional harmony and fatalism are strong beliefs. Talk of death is believed to disrupt inner harmony and many believe that while expected to do what they can to take care of their health, when and how they die is a matter out of their hands. The lack of a healthcare proxy seemed to cause more problems than any other single factor my friend encountered while her mother recovered. As an only child, the responsibility fell on her and trying to determine what decisions her mother would want made when her mother was still unable to communicate. This stress was added to the fact she was also trying to cope with her mom going through a serious condition where the outcomes wouldn’t be known for a while.
Watching my friend struggle through this situation made me determined to speak with my parents about creating a health care proxy or advanced medical directive. Before approaching them though, I knew I needed to do my research to see what type of obstacles would get in the way due to my parents traditional Chinese view of medical treatment. First, I learned the difference between a healthcare proxy or someone who makes decisions for you if you could not do so yourself and advanced directives or a living will, which lets the person spell out what life sustaining measures they would want used such as heart lung machines or feeding tubes (Goldberg). I anticipated a difficult conversation around these issues and was not disappointed.
I apologized for bringing up the topic as I knew I was being disrespectful discussing their potential end of life issues yet I attempted to explain what I had witnessed with my friend and her mother, a family my family knows well, and that I felt it would be more disrespectful for them to be left in such a condition. I skipped over healthcare proxy, since I already knew that would put them in a catch 22. On the one hand since filial duty is so strongly adhered to, they might worry I would make decisions that were too aggressive in their view in order to take care of them or that I’d would be concerned that the failure to do so would make me look like a neglectful child. Also Chinese Americans tend not to be very autonomous so the idea of asking just one person to be responsible for such important decisions would have made them uncomfortable.
I explained the concept of a living will and there was initially quite a bit of agitated conversation between my parents in Mandarin. I had obtained some literature from the Chinese American Outreach team of Caring Connections which I realized I would need to leave with them for a while. A few weeks later we tried again and my parents were more amenable to discussion but had a host of questions listed. Regardless of my training they asked that I get the answers from a male doctor, not unusual in their culture but a request that made me feel inadequate none-the-less. Regardless of knowing the answers I did as they wished and asked a colleague at my practicum site if he would answer some questions for my parents. Throughout the process my parents used me as a go-between rather than as a primary source of information or guidance which is a normal way of handling serious situations involving difficult decisions. Truthfully, despite my chosen career path I also felt more comfortable in this role.
When it was time to complete the actual documents as I had suspected they chose not to appoint a healthcare proxy (explained to them in my absence by my medical colleague), but did complete a living will that was very clearly detailed. A big issue for them was the idea of withholding treatment as my parents were concerned about end of life comfort. They were reassured that despite withholding extreme medical care solely to prolong life by a short time pain medication and other methods of keeping them as comfortable as possible would continue to be administered. While I was expected to be in the room with them while they competed the forms with a community attorney, I was also not expected to say anything at that point unless they had missed something significant. It was a strange position to be in but in the end, both my parents completed living wills that they were satisfied with and which gave me some relief due to there being almost no potential decision making on my part should the will need to be invoked. While I won’t say these weeks were the easiest of my life I believe that my parents have increased peace of mind due to the presence of advanced directives and I also feel relieved I can remain in the role of child and not forced to make their healthcare decisions for them.
Works Cited
Gabrielle Goldberg. Health Care Proxy vs. Living Will. Get Palliative Care. December 2010.
Web. 16 June 2014.
