Your are reading Part 10 of my series, “What to expect from your hospice nurse.” To gain full perspective, I encourage you to start from the beginning by visiting the series landing page HERE.
Everyone reading this article right now is dying. Even the guy writing these words is dying. Death is awaiting us all. Nobody can escape it.
Over the last eight years I have learned that everyone is dying, but not everyone is dying at the same speed.
Your nurse has the impossible task of trying to predict your death. She won’t be able to give the day or time, and please don’t expect her to do so, but she does have the job of tracking your decline in a whay that provides her with a general idea of when your end is close.
Today’s article might seem a little dark at first. I wrote the previous three paragraphs to make it as dark as possible to start, so the rest of this article won’t seem quite as depressing.
The Last 7 Days
Medicare really encourages increased visits for hospice patients in the last three days of life. I believe that waiting till the last 3 days of life to increase visits is a little too late and really hard to predict. I have found it more effective to start increasing visits when I think my patients are in the last 7 days of their life. The last 3 days are just too close to the end for me to really provide what I think my patients need.
In this article I want to provide you with what I (generally) see in the last 7 days of life. I hope to cover some of the challenges you, or your caregiver, might face.
I will remind you that this is generally speaking. I just recently had a patient who died with absolutely no notice. He was his (hospice) normal self on Friday, and the next day he went to take a nap and didn’t wake up. This is not what I usually experience with my hospice patients, but it does happen often enough to remind me that death, ultimately, cannot be predicted.
Food and Fluids
Oral intake is the biggest indicator that someone is nearing the end. When someone is in their last 7 days of life, I will usually see a dramatic drop in the food and fluids they are drinking.
When I was a kid I remember hearing that someone can only live 7 days without food and 3 days without water. In eight years of hospice I have seen this be wrong more times than I can count. I have watched patients live up to 14 days with no food or water.
In general, my patients stop eating first, and will stop drinking water a few days later. They usually stop drinking the water because they get sleepy from the lack of nutrition. As I mentioned in my LAST ARTICLE the cessation of food is not a painful activity. It’s perfectly natural. Everyone does it eventually.
It can be challenging to know if you should, or should not, try to give food or fluids when the end of life is close. My advice is that if the patient cannot actively participate in the activity, you should not attempt to give food or fluids. If someone can’t let you know if they want food or fluids, it is best to not try to administer them.
IV fluids are a terrible idea
I can’t write this article without mentioning this. I have been asked more times than I can count if I was going to get an IV started during the last week of life to hold off dehydration.
This can sound like a great idea to the lay person until we start to analyze the idea.
Trying to manage an IV at home is an exercise in futility. All hospice patients are dehydrated. All of them. This problem alone makes it impossible to try to have an IV at home. Have you ever been really sick with the flu and had to go into the ER to get fluids? You’ve been vomiting for days, and now you want an ER nurse to get an IV going to start fluids. All your veins are shrunk up do to dehydration. The nurse may have stuck you multiple times before she could get a good line.
It is even worse for hospice patients. Hospice patients have been slowly dehydrating for weeks. Trying to start an IV on them is just going to cause pain and injury.
Even more serious is how the body is likely to respond to a sudden influx of fluid into the vascular system. It would be easy to overload the heart and kidneys and cause the fluid to just build up in the lungs causing increased chest congestion. The fluid is likely to come pouring out of the patients mouth. This is not a pretty sight.
Dehydration at the end of life is not painful. Using a moistened sponge on the lips will provide plenty of comfort. Dehydration at the end of life just causes increased lethargy. It’s okay to let nature take its course and avoid the IV.
Oxygen is not necessary for comfort
Oxygen doesn’t just prolong life. Oxygen can also prolong death.
As someone progresses towards the end of life, their oxygen levels in the blood will decline. This can be measured with a pulse oximeter that can be purchased just about anywhere. I’m not encouraging you to purchase this device. I just want you to understand that it is easy to measure oxygen in the blood. Most hospice nurses carry one of these devices with them to all their visits.
Oxygen levels dropping does not cause discomfort. Like other problems I have mentioned in this series, low oxygen levels cause increased lethargy. Your oxygen going down is most likely to make you even more sleepy.
Some patients will experience feelings of “air hunger” at end of life. Rather than applying oxygen, it is recommended to administer morphine. There are a lot of articles and information online for how morphine can help alleviate feelings of air hunger at end of life.
Feel free to click HERE for a google search of this topic.
When should oxygen be used or stopped?
So, let’s cover when to use oxygen at end of life and when to remove it.
Most patients who wear oxygen at end of life have actually been using oxygen for a while already. At end of life, patients who already wear oxygen will want to continue to do so. This is because wearing oxygen is a psychological comfort to them. Removal of oxygen can cause them to be anxious. For a while oxygen has been a life saving necessity for them. In the early stages of their decline and movement towards being unresponsive, they will want the oxygen to stay in place.
Once a dying person is no longer responsive, the oxygen can be removed. This might be a sensitive topic for some people. Removing oxygen at the end of life is not killing someone. Eventually, it won’t matter how much oxygen you pump into someone, they will still die. Oxygen does not guarantee continued life. Sometimes, oxygen just makes someone die longer than is needed. I have removed oxygen from a dying person many times to see them pass peacefully just a few minutes later. Removing oxygen at the very end of life is humane thing to do.
This can be a very sensitive thing for some family members. I would recommend a conversation ahead of time so everyone is on the same page. If anyone is against the removal of oxygen, it is okay to leave it on. It’s not worth a family fight at such a sad time.
Nurse visits in the last 7 days
There can be some variety when it comes to your nursing visits in the last 7 days of life.
At the very minimum, you should expect your nurse to visit at least daily in the last 5-7 days of your life. This is when you need your hospice nurse the most.
Some agencies will require more than once daily visits by nursing staff. Some will require twice a day visits or even three times a day visits. This is a question I would encourage you to ask early in your care. You need to know what to expect when the end is close.
What will my nurse be monitoring in the last 7 days?
The most common symptoms at end of life are pain, shortness of air, confusion and excessive oral secretions.
Please understand that the dying process does not necessarily cause pain. It is disease processes that cause pain. This is why some patients will need a lot of pain medicine at end of life, and some patients may need very little or no pain medication at end of life. Your hospice nurse won’t start pain medication unless it is obvious there is pain to be treated.
I would encourage you to return to part 3 of this series and review the comfort kit. These medications are what your nurse will want to access in the last 7 days of your life. These medications are what will control the most common symptoms that may appear,
With each daily visit, your nurse will review how much medications your caregiver has had to administer to keep you comfortable. At this time your nurse may need to consult the hospice physician and schedule medications to be given around the clock to make sure you stay comfortable.
As I discussed in part 3 of this series, these medications are not used to hasten death. They are used to help keep you comfortable.
At what point will hospice stay until death?
I get this question quite a bit. It will usually come from the patient or the caregiver. They want to know at what point will someone from hospice stay at the home permanently until the patient dies.
As I mentioned in part 4 of this series, hospice is supplemental care. This means hospice isn’t meant to replace friends and family. In part 2 of this series I discuss the 4 levels of hospice care that are required by Medicare. A couple of these levels do provide for extended care by the hospice provider. I would encourage you to return to that article to see what services are available from your hospice.
Your hospice provider is not required by Medicare to make sure someone is present when you take your final breath. There are a few hospice agencies who will try to provide someone to sit with their patients when they are in their last 24-48 hours of life. This is very agency specific, and should not be something you expect.
Predicting the last week of life is not always obtainable, but there are some warning signs.
Any dramatic changes over a short period of time can be an indicator that the end is close. A big change in level of consciousness or a sudden stop in oral intake can be some of the most obvious signs. Increased confusion or sudden decrease in vital signs can also be an indicator that someone is close to the end.
Ultimately, nobody can predict the exact time or date. Your nurse will do the best she can, but it’s just not something anyone should try to guarantee.
For even more on the last 7 days of life, I would encourage you to listen to Episode 16 of The Hospice Nursing Podcast. In this episode I spend an hour providing hospice nurses with information on how to handle their patients at end of life. Click HERE to listen from this website.
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