I just have to write about this as it makes me nauseous and I am hoping today’s blog is cathartic. This is not the first time I have encountered an adult child of a dying parent use every argument possible to explain why they are allowing their parent to suffer as they decline.
In this instance, the patient has an advanced terminal illness in conjunction with a very very painful fracture. The patient is too frail to tolerate any type of surgical repair of the fracture. The adult child refuses to fully medicate the parent for movement, repositioning, personal hygiene and other activities that cause the patient considerable pain. The patient cries and cries out, clings to the hospice nurse, grimaces, white knuckles the bed rails and more. Even when the adult child is told that she MUST medicate before the hospice staff will assist with these activities, she “forgets”, gives half of an already insufficient dose (the only med she would agree to when she elected hospice benefits) or says that she is a “degree holding professional” and she understands the patient and the care. In fact, she insists on getting the patient out of the bed and placing her in a wheelchair for 5-7 hours a day because, she says, “she will decline and get bed sores and die” if she is allowed to stay in the bed and be comfortable as she declines.
The philosophy of hospice is to support the patient AND the family and it is obvious this adult child has denial or guilt clouding her ability to truly advocate for the patient as she declines. In fact, she has stated that she believes the fracture is just “a bump in the road” and that the patient will improve. Efforts to show her the level of decline based on a variety of tested assessment tools do not work, she states that they are not accurate, that she knows the patient better than the professionals involved do and that time will show that the patient will improve. A family meeting with the adult child is planned but all the involved professionals agree that the daughter will not allow herself to “hear” the reality of her parent’s decline.
When patients are actively declining, in the late stages of a terminal disease process that has NO KNOWN CURE, moving them out of the bed just causes pain. IT DOES NOT PROLONG LIFE OR IMPROVE THE QUALITY OF LIFE. It just causes stress, pain, anguish and a decreased sense of well being.
Why? Why would you knowingly do things that cause pain and not medicate to alleviate that pain? At the very least, it is humane to medicate for comfort. If this person were not old and not frail, but was suffering in pain, would any reasonable person not medicate for pain? It makes no sense that because there is a terminal illness or because they are old they should be allowed to suffer as some sort of function of keeping them alive! Just writing that makes me think of some type of Tom Cruise futuristic psy-fi movie.
My team and I will ask the adult child “what would you want if you were the person and your parent wanted to get you out of bed, move you, reposition you and provide your care without medicating you, hearing and seeing the level of pain that you are experiencing” and ” talk to me about how you know that 1/2 the pain medication is enough and how you know that the patient is not dying and how you know the patient will recover” and “what training and scientific tools are you using to tell you that you are making the best choices for your parent?”
Comfort and a good death. That’s all anyone wants.
So the problem is that the adult child does not want to accept that death is on the way.
But it is, for all of us. Please, give the pain medications, allow peaceful rest without painful, futile activities. You may be a degree holding professional, but you have not experienced a painful death, you are not specifically trained to care for the dying, you know nothing of proven methods for prognostication and you are working from a point of emotion, not research proven fact.