Overcoming Barriers to Starting Hospice Care Sooner
Toby Balke, R.N., M.S.N
“I’m not ready to give up on my husband.” “Hospice just medicates you to death.” “My doctor said, ‘he’s not ready for hospice’ yet,” or “I don’t want to stop taking the medicines that are keeping me going.” There are common misconceptions that might keep patients or their families from choosing hospice care when hospice could make an enormous difference in one’s quality of life for more than just a few weeks or days.
As a hospice nurse, many people have said to me “I wish I knew about hospice sooner” and “I wonder why my doctor didn’t order hospice sooner.” Maybe it’s because the doctors do not understand what qualifies a patient for hospice, or because they don’t want to lose you or your loved one as a patient, or they do not understand the burden the disease causes in your daily life. It is true that whenever you choose the hospice benefit you can no longer continue to visit the specialist covering your specific disease process. But that does not mean you have to stop taking the medications that your doctor has prescribed. Some patients are taking ten or more medications daily. When you go see your doctor time and time again and there are no changes made to your treatment plan, it can be taxing to get to the appointment, wait, see your doctor for 5 minutes, then get back home totally exhausted, and no changes have been made, hospice may be a great option to consider.
One example comes to mind. I met a woman who was telling a group of us that her husband was extremely ill with heart failure. Getting her alone, I explored with her the challenges that she and her husband were having. She said that going to the doctor or anywhere was just so much trouble for him. She explained that he was no longer able to enjoy the things that he loved doing and that he was ready to “go home to be with the Lord.” She let me explain the benefits of hospice and became very hopeful that this would be an answer to prayers. She went home and called the physician who told them that he did not think her husband was ready for hospice. The lady felt that the doctor was not ready to let her husband go into hospice. They decided to allow the hospice medical director to review his case and certify him for hospice care. The next day, he signed up, received oxygen and some other equipment, medications for symptom control, and he continued taking his regular heart medications. The doctor’s nurse called them and was terribly upset that they had chosen hospice, but they did not regret that decision. He felt so much better receiving the things he needed to feel better and wasn’t living for the next trip to the doctor’s office that would most likely have no change in the way he felt.
He did not wish to ever be hospitalized but wanted to die in the comfort of his own home, surrounded by those he loved. The gentleman lived comfortably for about 3 months. Other people can live for a year or more. He had awakened from a nap, walked to the bathroom and back to his bed, laid down and took his last breath.
His wife still thanks me often for taking the time to explain hospice allowing him control over how he departed this life. She said, “I’m glad we had hospice, I just wish we would have had it sooner.”
Sometimes people have a different desire, some want to go back to the hospital if they need to, and that is okay too.
When the burden of the disease becomes too great, accept help from hospice. If you decide to go back to the hospital, you have the option of revoking the hospice benefit to seek care that would be outside of the hospice plan or care, and then come back on services when you return home. What many people find is that the care they receive under hospice care is more than adequate to meet their needs and that the myths about hospice are refreshingly untrue.