Progression of End of Life Care
In the time that I have been working with Sierra Hospice I have found that, thankfully, most people do not have much experience with hospice. We provide help, comfort, and care to families and patients when someone has entered a stage where they are no longer receiving treatment. This can often be confusing or seem counterintuitive, especially if you have had more experience being in a hospital or working closely with medical professionals, the idea of moving into what is commonly called “comfort care” is a big and, for some, strange step. Our instinct as humans is generally to try to fix, treat, or cure what is wrong, yet when a person enters hospice they have made the choice for themselves that they would prefer not to continue anymore treatment moving forward. For families, friends, and loved ones this can often cause some friction, but our patients are choosing to accept their situation and try to live out the rest of their days in the comfort of their homes surrounded by those that they care for. In these situations the hardest thing of all is often to know there is nothing more that you can do except, really, to be there for them.
To compound this problem we often find that families and loved ones are not sure what these last stages of life are supposed to look like. Of course there is no one answer to this, everyone and every illness is different, but there are some commonalities that might help you understand the process better as you move forward with hospice care. The following stages are by no means exhaustive and may not apply in all cases, but as a general roadmap for what to expect this information can hopefully be helpful to prepare yourself.
In the Weeks before death…
…you will likely notice a change in the amount of time they are sleeping, the amount they are eating, and a change in some of the way in which they socialize with others. They can become less communicative and stop wishing to eat solid foods. They will start to need more help with daily tasks such as getting up, getting to the restroom, eating, drinking, and getting dressed. They will likely also sleep much more and it is important to allow them to sleep as much as their bodies need during these weeks.
It is important to remember that as the illness progresses in these weeks it will become, to borrow a vernacular, ‘the new normal’ to help them with some tasks that you previously may have never helped anyone with before. The first few times of helping someone get to the bathroom, get dressed, or cleaning up after them is going to be awkward for everyone, but it does become easier and simply part of day-to-day life after a while. It is okay to feel odd about it at first, but remember as a caregiver you are there to make them comfortable and as a patient this is a natural and normal part of life and it is okay to get help when you need it.
It is also in this stage that Sierra Hospice recommends purchasing or acquiring through insurance a hospital bed for the home. For our hospice patients we are able to provide hospital beds, along with delivery and set up, for those that need them if you cannot afford one or do not have it covered by the patients insurance. Like all of our services this is completely free for people in our area and something we believe is vital to helping both the patient and the family in this stage of the hospice process. Hospital beds may seem scary to put in the home, but because they allow caregivers and medical professionals, as well as our hospice volunteers, to have better access to the patient they are truly vital. In the weeks before passing the patient may choose to remain in their own bed as much as possible, which of course is great when they can still get up and around, but as it progresses the hospital bed will become more and more of a necessity. It is better to bring it in earlier than you need it as you often will not have much time to make arraignments when it does become essential.
In the days before death…
…you will start to notice that there are more obvious changes to their body. This may be seen through simple observation as they may begin to have more difficulty breathing, may cough more, and may have changes to their waste as well as physical changes on the skin such as blotchy skin. Sleeping patterns may become less predictable and if you are able to monitor their vitals you may see drops in blood pressure and temperature changes. It is possible that they may also start to experience some hallucinations at this stage.
At this stage it is truly important to remember that if they have the proper pain medication they are often not experiencing any real pain through this. If they are experiencing pain it is important to consult with your medical professionals about changing their medication or doses. There is really no good reason for anyone going through this phase to be feeling pain at all, so making comfort your number one priority for them is key.
Another thing that can be truly confusing for families is the idea that eating, for them, is no longer going to be a major concern. If they are hungry and ask for food then by all means get them food and whatever else they’d like, but a hospice patient at this stage does not need to eat, solid or liquid, food any longer if they do not have an appetite. Again, as humans we tend to think that food is a comfort and something to help us heal, but at this stage trying to get someone to eat who simply is not interested in food anymore does no one any good and can cause harm as they may no longer be able to swallow normally. If they are having trouble swallowing but are having a dry mouth then you can moisten a sponge swap and wet their lips or allow them to suck the water out if they are still able. It will be difficult to keep them properly hydrated at this point, but this can help reduce the discomfort from the lack of water in their system. If you do not have a sponge swap you can use clean washcloths or new sponges to help wet their lips and give them some hydration, but be careful as they may no longer have the strength to hold those items themselves so you may have to help in doing it for them.
The day before death…
…you will likely see much more sleeping, more difficulty in basic interactions with others, and more changes to their body, or at least more pronounced changes. They may have some energy or restlessness at times, so it is important to stay with them and to be able to calm them and speak to them normally if they do suddenly come awake. It is possible that you may not notice any changes in the day before, so be mindful that it may seem like a day similar to the last few weeks.
It is important here to continue to make sure they are comfortable and that they are still clean and pain free. For many people experiencing this first hand this may seem like the time to have them say goodbyes to anyone, but unfortunately at this stage they may not be able to truly interact with others anymore. While it might be tempting to try to wake them to call or connect with people wishing to say goodbye it is better to let them sleep and to simply be reassuring to them if or when they do wake. The final days of any illness that has brought someone to hospice are generally peaceful but they take a massive toll on the body and trying to have even a simple call or connection may simply not be possible for them at this stage.
In the hours before death…
…you will see their body beginning to shut down. This may be seen through lower and lower vitals, glassy eyes, cold hands, and a weakened pulse. They may still be able to hear you but no longer able to communicate and could experience more hallucinations or confusion.
At this time there is no longer much to do but be there and provide a peaceful and calm presence in their room. You’ll likely experience a wide range of emotions at this time yourself and it is okay to walk away or move from the room for a while if you find it all overwhelming. Often times you’ll hear from hospice workers and volunteers that the patient tends to pass as soon as a family member or loved one walks out of the room. While this is more anecdotal, it is common enough to find that loved ones, family members, and caregivers are often not in the room at the time of death and that is perfectly normal and nothing to ever feel guilty about.
In the last hours and then after death you’ll be experiencing grief and other emotions. It can be very hard to understand all that you are feeling, but know that there is no “wrong” emotion to feel. Some people feel a sense of relief that their loved ones suffering is over, others may even feel a sense of relief that they no longer have to devote all of their time to caregiving for their loved ones. That in turn might become a sense of guilt for feeling that and a sense of anger and self-loathing. Yet it is normal, it is all normal, and it is okay to simply feel your feelings without feeling remorse for experiencing what you are experiencing. We all experience things differently, and there is no right way, or right amount of time, to grieve. It is okay to seek out support if you need it, and it is okay to take some time to process it on your own. There are no right or wrong answers and no right or wrong feelings. If you feel, though, that you do need more help through this time Sierra Hospice can help to connect you with volunteers and others who can be there to help support you at this time.
After death has occurred…
…you will want to get in touch with whomever you have made your arraignments with. If you are uncomfortable being in the room with the body you may of course leave that space, though someone will need to remain at the residence to speak with the responders who will arrive. Many people have never been in a room with a body before, and so it is normal to feel overwhelmed. Just know that in that moment you did everything that you could to make their passing as peaceful and comfortable as possible and that this was their wish – to be able to die peacefully in their own home. It is never easy, and never gets easier, yet it is the natural end to a life well lived and knowing you helped make their final days as good as possible can make it much more easy to accept.