People who have a terminal illness often prefer to spend their last days at home, rather than a hospital. WVU published research this month showing there’s a way to make it easier for those people to do so. In reality, it all comes down to paperwork.
Janet Black looks up from her bed. She is terminally ill with end-stage lung disease and is due to be discharged into hospice care any day.
“I can’t stay in a hospital forever so we had to look at alternatives to get me out of the hospital and to get me to where I could get the help I needed,” she says.
Janet Black is 73 and has known she was sick since September. Doctors give her about six months to live, although she matter-of-factly stated she thinks she has less time left than that. Her daughter Tammy was in the hospital with her.
“Coming home, that’s her decision,” says Tammy. “That’s what she wants and that’s what we’re going to do.”
Janet stresses she wants to be comfortable when she passes from this world, and that she doesn’t want emergency medical personnel to try and save her.
“I don’t want no CPR or resuscitation when it comes down to that point where there is nothing they can do – just let nature and God take its course and do what is supposed to be done,” she says.
So under her physician (Doctor Alvin Moss’) direction, she filled out a POST form. This form makes Black's end-of-life wishes absolutely clear and, most importantly, the POST form is registered online where caregivers can easily locate it.Moss is coauthor of a study published this month in the Journal of Pain and Symptom Management, which found that 92 percent of West Virginians prefer to die outside the hospital, yet only about 60 percent are able to do so.
“You just want to be home where you can get the care and the love you need, so you can give care and love to them as well.”
Janet also has an Advanced Directive in place. That lets medical personnel know who she wants to manage her care. Signed forms are important. Moss’ study also found that 57 percent of patients who have signed an Advanced Directive, but no POST form, die at home, while the figure jumps to 76 to 88 percent for those who signed both of those forms.
The POST form has been available in West Virginia since 2002 – one of six states to pioneer the idea. Now 43 states either have a POST form or are in the process of developing one.
West Virginia is also one of the only states in the country with an electronic registry.
“We are the most comprehensive registry in the country,” says Moss. “Thirty-seven forms a day, 1,000 forms a month – up almost 200 percent since we started doing this three years ago.”
Moss says that prior to the forms being accessible online, about 25 percent of all forms – both Advanced Directives and POST forms – were lost, meaning that patients like Black often received end-of-life care, such as CPR or a tube down their throat, that they didn’t want.
“We actually even know that 550 times a month, physicians go online and find the form on a patient they want, so it’s working.”
Moss said that in the end, most Americans say they want to live as long and as well as possible and to die gently. The idea behind the form is to help people die with dignity.
Appalachia Health News is a project of West Virginia Public Broadcasting, with support from the Benedum Foundation.