12/22/2024
7 days of end-of-life tips
Tip # 5
“Why are routine medications discontinued, and food/water stopped when someone is on hospice?”
I have heard from several family members who feel as though starting hospice is what ended the life of the person they love, because they died shortly after admission. There are many misconceptions, most of which could have been avoided if better education was provided.
“When my mom started hospice, they immediately discontinued her medications, and she died.” People honestly believe that hospice is the cause of death, something I want to try to change. Forgive the length of this, but I wanted to be sure to provide as much information to truly honor the fear and hopefully reduce it.
When someone is admitted on to hospice, their medications are reviewed by the admission nurse who collaborates with the hospice doctor to determine which ones are no longer beneficial. There is no need for someone to take 5-10 pills if they are not helping in some way, especially if swallowing has become difficult. They might also be discontinued because they are causing symptoms that can be avoided.
Hospice covers most medications which relate to the diagnosis and the symptoms from the diagnosis. If their current medication is not on the hospice formulary, it would need to be paid for out of pocket. The doctor might suggest a different brand that would be on the formulary, to save the family money.
Medications are discontinued because they are no longer providing a benefit, they are difficult to swallow, or they are expensive and not covered under hospice. The doctor discontinues the medication truly for the safety of the patient. If there is a medication the patient or family wants to continue, the doctor might attempt to have it covered, but if it is not and the family still wants it taken, this can be discussed and might be considered.
Another fear about hospice is that food and water is "stopped" and the patient dies from starvation or dehydration. This is one of the things I hear most often. Food and water is not "stopped," we offer an explanation that it is no longer safe, but it doesn’t necessarily happen at admission UNLESS the patient is declining quickly or actively dying. If someone is struggling with swallowing, their safety is of the utmost importance to the hospice team. We would never intentionally do something that would cause or increase suffering. Usually, we try to help the family understand why the patient is choosing not to eat or drink anymore, while explaining how unsafe it can be for them.
There are a few things I look for to determine if someone has difficulty swallowing:
· They might pocket food in their cheeks.
· They might close their mouth refusing food.
· They might shake their head “no” or turn their head away from the food.
· They might cough when drinking liquids.
If any of these are happening, we know they are trying to let us know that they are no longer interested in eating/drinking and that swallowing is difficult and sometimes even scary for them. Most people think that food and water will help keep their person alive longer, perhaps even stronger, but what they don’t realize is that at a certain point the food and water can become more dangerous and could increase their suffering by causing them to choke. Please know that the body does not need food or water when it is trying to let go. In some ways, the food and water can make it harder to shut down, so discontinuing it can make things more comfortable for them. If your hospice team suggests not forcing food and water, it truly is in the best interest of your person.
If they are still able to eat and enjoy food safely, we are not going to suggest you keep that from them. We are not in the business of starving people; we are always putting their safety first and want to be sure that you do not have to witness further discomfort and suffering. What we will also do is educate you on ways to ensure safe eating and drinking, such as making sure they are sitting upright, and offering smaller and easier-to-eat portions.
Education is key and your questions are valid, appropriate, and absolutely should be addressed. As a hospice nurse, I never want to leave someone feeling fearful or uncertain, and I do not want them thinking that hospice ended the life of the person they love.
I truly hope that this information is helpful.
xo
Gabby
www.thehospiceheart.net
For all of my tips, you can find my book “End of Life Tips” here:
https://www.amazon.com/Life-Tips-Gabrielle-Elise-Jimenez/dp/B0C9G8PZZ5
