Remember playing the game of telephone in grade school? A message would be sent around the room, whispering ear to ear with the goal of getting a message from student to student without losing the message. The message never came out right; something was always lost in translation, and what was intended was lost. This is also the way of receiving information about hospice. There are so many misconceptions and half-truths regarding hospice care, and these can prevent a person from benefiting fully from the program. The following are some myths or false ideas that we personally hear about hospice. After reading this, I hope that there is some clarity and understanding.
- Hospice is expensive. This is false. The Medicare hospice benefit pays 100% of all medications and supplies regarding the hospice diagnosis, this includes any medications to treat the symptoms of the disease.
- Hospice “killed” my loved one!!! As soon as my loved one was put on hospice, she died. Let us think about this. Medicare has a set of standards that are required for a patient to qualify for hospice. The very first standard is that two medical doctors must state that the patient has a terminal disease with which life expectancy is less than six months if left to run its natural course. The doctor makes an educated guess based on lab work, decline, physical appearance, and increased dependence, and bases the diagnosis on this. If your loved one passed quickly on hospice, it is because they had a terminal disease that moved quickly.
- Hospice stopped all medications. This is a half-truth. Hospice Medical directors and physicians evaluate medications and can eliminate what is not necessary for quality and comfort, but Medicare guidelines require the ability to remain on medications per the choice of the provider and family. Medicare will not pay for unnecessary medications or medications that are unrelated to the diagnosis, but you still have the right to decide.
- Hospice pushes morphine, and they die quicker. As a hospice nurse, this statement is so irksome! Morphine is an opioid narcotic that has earned a bad reputation over the years. In an uncontrolled environment, like any other drug, Morphine can be dangerous. Morphine is a smooth muscle relaxant, which means when we are uncontrollably short of breath or in severe pain, morphine can be prescribed to relax those muscles and allow easier breaths and less pain. Not all patients require morphine, and not all hospice patients are given morphine.
- Hospice means the patient is giving up. This is a myth. Hospice programs were designed to provide comfort and quality care when no other curative measures are possible or planned.
Let’s look at this scenario:
John is a 75-year-old man who has a long history of diabetes, congestive heart failure (CHF), and kidney disease. John was rushed by ambulance to the hospital for the 5th time in a year with respiratory distress, severe edema and he has a large sore on his right foot. At the emergency room, John is diagnosed with end-stage congestive heart failure, and he is in total kidney failure. His foot will require amputation, but John would likely not live through surgery. His family and John are given a palliative consultation. John is told that they can expect to be in the hospital for several weeks to attempt to get his CHF under control, but that the prognosis is poor because medications that are given to remove the fluid from around his heart will be ineffective due to his kidneys being unable to support the medications. He may not ever go home.
John is told that he could receive care at home to treat the symptoms and that with the help of hospice and his family, he would have time to take care of things and help his family plan for his passing. John lived 11 months on hospice, he passed in his home with his wife and children around him. During that time, John attended his granddaughter’s wedding and was able to hold his newborn great-grandson. For John, had he not been offered a palliative consult, he would have likely spent the next several weeks in hospital and would never have had the time for some incredibly important and special moments, and he likely would not have returned home.
Hospice is not giving up hope, it is changing the idea of hope. We stop hoping for a cure and start hoping for peace, time to be with our loved ones, and that our inevitable end is comfortable.
I hope that our readers find this informative and that there is a better understanding of Hospice care. If you or someone you know is struggling with a terminal diagnosis, Generations Hospice care staff is just a phone call away. Please feel free to reach out and we can answer your questions.