End of Life Care…a Difficult Conversation?

Thinking about end of life care is not easy…this topic has been coming up a lot in critical care clinical, as I have been taking care of patients that have been given dire prognosis, more so than in any clinical so far. When I was assigned a day with the case worker, I was surprised how often this topic came up, which was every time. Cottage case workers review each patient’s advanced directives and encourage the patient to have written instructions included in their file in case of an end of life event. I found that there is a booklet called “the Five Rights” which is a legal document that outlines an individual’s wishes for several scenarios regarding end of life care. I witnessed several patients refuse to speak to the case manager about these wishes, and others be completely open, even if their condition was fine. In these cases, these patients were simply well prepared.

I asked the case worker if I could have a copy of the Five Wishes booklet and took it home. I read through it and found questions that I felt comfortable answering, and some others, not so much. Maybe actually thinking of details made me uncomfortable, I’m not sure. That night I also approached my mother about the booklet. To my surprise she knew all about it and said that she thought she had filled it out, but wasn’t quite sure where it was. My mother is Chinese, and in our culture we do not speak of death or arrangements, but do have a strong cultural tie to confucianism, which honors the dead as part of the current living family. I knew then that she was a bit more open-minded than some of my Chinese family and asked her if we could chat more about the Five Wishes booklet. After several minutes, we agreed to arrange a meeting between my sister, her and myself to fill out booklets. I felt morbidly relieved!

I recently was doing research for a paper that included aspects of ritual and culture at time of death. Although the authors of these articles could give many examples of end of life cultural norms, they also specified that it could vary. I believe that the last ingredient is always each individual’s emotions, experience and expectations regarding death and the dying. Any combination can influence the actions that occur at the end of life, whether an individual openly/willingly participates in their own or another’s.

This is definitely the case in regards to the meeting with my sister and mother that I tried to arrange. Here we are, weeks later and my sister has been delaying our meeting. On my mother’s and my side, we have been trying to make arrangements to get the booklets filled out as soon as possible. In a sad coincidence, a friend of the family is in hospice care at the moment; my mother and I have been paying regular visits and it has been difficult. Even more difficult is that he has no advance directives and can barely speak. He would consider himself a traditional Chinese man and has been avoiding any topic regarding end of life care, even with his doctors. There are many details, including the fact that he owns a dog, that are left hanging. Until recently he was refusing to agree to a DNR as well. As my mother and I have been seeing what happens without clear instructions, it has fueled our desire to fill out the Five Wishes booklet.

I understand that every individual is unique and has a right to the end of life care that they desire. What makes this hard to face is that end of life involves family, friends and a healthcare team, so it is important to make sure that all those involve know what the patient wants. It can be a difficult conversation, or as in my mother and my case, one that is relieving.