Limits

I have to say that this year I have learned a lot about the whole issue of limiting ones care and about the folks that while extremely ill, still want everything medicine wants to offer. For me, if I were to become terminally ill, couldn't communicate with people, had to have someone else take care of me, well, I wouldn't be able to stand it and would ask for hospice but many, many patients and families don't see it that way.

I have to say I have a pretty hard time with seeing what I perceive to be tremendous suffering. I hate to see diapered, contracted, drooling people, assuming that they are unaware of their surroundings, and are in some sort of psychic or physical pain. I curse their conservators or their family members for not changing their code status, for not just making them comfortable and allowing them to pass into the next world peacefully. However, my assumptions are not always correct. Some who appear this way are actually cognizant of their surroundings and are communicative in ways that are not immediately apparent. These folks somehow are actually okay with being ill and content to live their lives in their current state of being. It's hard to understand why, it's extremely hard to put myself in their shoes. I often question their sanity. I shouldn't be so judgemental. I guess I should applaude their ability to stand steadfast in their desire to live whatever their condition. Perhaps there is some sort of closure that they haven't experienced yet, perhaps a life task that has not been completed. It's hard to know and harder for those who care for them to accept.

Sometimes I wonder if we as medical providers offer too much to these folks. I question the ethics of continuing to offer life saving or prolonging treatment and medication to those who appear to have zero quality of life. For some providers it's hard to justify thousands of dollars worth of medical care for a seemingly vegetative or uncommunicative person, or one that while communicative, is curled into a ball and unable to participate in life except for verbal discourse with those who have the time for him or her. Years ago, some of what we now have to offer wasn't available and many people died a more natural death, there were fewer nursing facilities, fewer vegetative and contracted people lying in beds or wheelchairs. Now, there are more and more people who live this way because we have the technology to keep people alive and many people want to be kept alive no matter the consequences. They are okay with not being well. I should be okay with it. I'm not. I can understand it but I wonder what it is that makes people unable to call it quits. Is it fear of the unknown? Is it a personality of dependence and entitlement that some people are okay with requiring someone to take care of them? Is it tenacity? Is it appreciation of life whatever the physical or mental state? And what it is with the medical profession who says it's not okay to call it quits. Who is alarmed if someone wants to die, states that they don't care anymore and have had enough.

I consider the state of my 91 year old grandmother. It will be a terribly sad day when she dies. She has been the matriarch of the family. Her piano playing has been a hallmark of family gatherings and of community goings on for over 60 years. She is now mostly deaf. She cannot see. She sees people and things that aren't there due to Lewey Body dementia or Charles Bonet syndrome, or a conglomeration of both. She is frail and needs assistance for almost every aspect of her daily life. She can't really participate in therapy to get stronger at this point because she can't see and is so afraid of falling, is so weak at this point that it is a monumental effort to have her do anything beyond sit in her chair day after day. This is not my grandmother. She has expressed that she is not okay with this state of affairs but she is still here. Her doctor continues to prescribe her medication for her high blood pressure, her eyes, and whatever else she takes medication for. The meds aren't going to make her better. Are they keeping her alive? Are they prolonging the inevitable and possibly the biggest blessing for her? I wonder. She is still brought to the doctor, her meds are still filled, and we are still concerned about her blood pressure. Should we be? Why are we not more concerned with the fact that she has lost her personhood, her independence, her zest for life. That she is subsisting in a grey world of uncertainty as she shuffles, assisted, to the bathroom where she is naked in front of strangers.

Limiting care is such a grey area. People, as in every other aspect of their lives, are so different from each other, choose vastly different ways of existing. It is hard to know when to applaude or jeer at the tenacity of ill people who still want to live despite their illnesses. It's hard to know whether to explore the reasons behind their seemingly poor decisions to continue or boost them up psychologically for the next medical onslaught. I have no answers. I must be respectful of their decisions. But it's hard sometimes, and it's disheartening to see continual human suffering that the person or their family has chosen. That I think is the hardest part. That the perceived suffering has been a choice someone made. A choice to be in the world no matter the cost.