Does it have to be this way?

My dear dear uncle is at this very minute suffering from bed sores.

http://www.mobilityspecialists.net/HomeMedicalEquipment/TherapeuticPressureReliefMattresses/PressureUlcers.aspx

Bed sores or pressure sores are horrible.  The skin completely disintegrates…losing layers of skin, exposing tissue under the skin. They are ulcers that are extremely painful and that can be very large.  They occur on skin that has had pressure on it for some time–skin of the buttocks, back and heels are common.  It happens to people who are extremely ill, who cannot turn themselves and must rely on caregivers to turn them, people who cannot take in adequate nutrition. Very vulnerable people.

Even though he has a living will with specific directives that say that extraordinary measures not be used to keep him alive, his wife has had to advocate for those directives to be honored.  There are many factors that are keeping him in the nursing home…one is financial-he has long term care insurance which will cover the cost of his care.  My aunt thinks that hospice care will not be covered by the insurance he has.  Another is that my aunt is elderly, overwhelmed and has poor health literacy.  Her nieces have been doing all they can, long distance, to help her understand all that is happening. But there is no one educating her and helping my uncle where he is.

My mother worked for years at a hospital to reduce the number of bedsores that occurred there.  At the end of her life she got a bedsore in that very hospital.  Hospice was never mentioned by her oncologist.  Also she feared losing the successful pain management that had been achieved at the hospital.  My sisters and I were at the hospital 24/7 to assure that she received the care she needed.  Unfortunately that didn’t help with assuring that she didn’t get a pressure ulcer.  She died in that hospital.

There are ideas for bringing discussions of End of Life and the care that is received out in the open.  One advocate for this is Alexandra Drane with her Engage with Grace website.

There are other advocates in this work: Kathy Kastner is one example.  She blogs at Ability for Life and is beta-testing an End of Life app.

What we need is to get all of healthcare–all patients (physicians and nurses are patients too)–talking about and thinking about how the end of life should be experienced.