Dear Barbara, My sister-in-law has intestinal and liver cancer and was recently denied Hospice care/services. The reason given was that she has a port to a vein in her arm. She has not been able to eat any food by mouth. The nourishment she receives has extended her life many months already and she has felt her active time has made it worth the trouble. Her cancer grows and spreads like they all do but understand she would have died many months ago. Obviously she was not ready at age 56 to starve her body to death in short order. Yet, her time is getting shorter nonetheless and her ill feeling times are increasing. She may only live a few more weeks or months. I'm sure she is afraid of death and not wanting to die, yet death is coming soon.
My question for you is wouldn't my sister-in-law benefit from a relationship with Hospice both spiritually and psychologically to help her prepare? It seems to me there is an unfairness in Hospice rules in her case in particular. People with other cancers are allowed to eat while they feel like it, even though they are dying and eventually will stop eating, too. I am a long time admirer of Hospice and would like help understanding the all or nothing position taken with my sister-in-law. Please give your advice along with your reason for the strong anti-intravenous nourishment stand.
Your sister-in-law is in a special category with her feeding program since her feeding was started months ago as the direct result of her cancer of the liver and intestine, before she had entered the dying process. It was started as part of her treatment program not as an extension of life after the dying process had actually begun. It appears to me she has fallen through a crack in the hospice system that basely considers, appropriately, artificial feeding at end of life is not necessary. End of life being the operative word here and a vague term at best.
Two to four months before death from disease occurs a person’s eating habits change. They gradually eat less and less. This is a natural part of the dying process. Artificial feeding, at this point, actually creates more complications than benefits. Your sister-in-law was not taking in enough nourishment before she really entered the dying process (because her particular disease would not assimilate food in her intestine). The key here is she had not yet entered the dying process when the artificial feeding began.
A question that comes to mind is whether your sister-in-law’s insurance is medicare or regular insurance? Regular insurance companies can negotiate Hospice reimbursement beyond what the Medicare guidelines dictate. Also, individual hospices, within a narrow space, can dictate their admission protocol.
Now to answer your question about whether I think Hospice services would be beneficial for your family. Absolutely! If after exploring another Hospice you are rejected again I would consider Palliative Care Support. Most hospitals now have Palliative Care Programs which are geared for people facing a difficult prognosis, challenging health issues and ultimately an end of life situation. They should be able to plug you into emotional and spiritual support.
I am sorry you find yourself in this lacking situation. Hospice services have become micromanaged by our government and the consequences have often resulted in lack of support and care for the very people that the services were intended.
