A commonly held view among those who work in hospice, or with end of life patients in general, is that most people who need to go on hospice wait too long to do it. Instead of opting for hospice care when they receive their terminal diagnosis, they decide to do one more round of chemo, or one more operation, in the hopes of prolonging their life—but these procedures only end up weakening their already frail system. By the time they are ready to concede that hospice care is their best option, they have become so drained and exhausted that they only live for a few weeks or days.
On the other hand, terminal patients who choose hospice quickly after their diagnosis often find that they are stronger and happier. Ending treatment allows their body some desperately needed rest, and even if they aren’t going to get better, they aren’t causing the additional suffering of harsh medications or traumatic surgical procedures. They can use the strength they have to enjoy the time they have left with their loved ones—and they often end up having more time than they expected.
We see these results over and over again, to the point where the choice seems like it should be obvious. So why is it that so many people still choose to keep fighting, so much longer than they should?
The answer is just as obvious: they’re scared. Who wouldn’t be? We have spoken before on this blog about how many people are frightened of death, especially because we don’t talk about it much in our current western culture. Many people don’t even really understand what hospice is, except they know that people go on hospice when it’s time to die. So whether it’s logical or not, they somehow believe that if they can just stay away from hospice, they can stay away from death.
Of course it doesn’t work that way, but you can’t blame a person for trying. Death is such a huge fear for so many people, it makes sense that they would try anything to avoid it, logical or not.
When we serve as doulas, it is important to remember that our clients are dealing with a lot of big emotions. The fact that they invite us into their lives at a time when they are at their lowest, dealing with fear, sadness, anger, and all the other potential feelings that come with grief is something we need to recognize as a major act of trust, and a huge honor. Our clients believe in our ability to help them through an incredibly difficult experience, and for many if not most, allowing another person—even a doula—to witness their pain can be nearly as difficult as going through the pain itself.
This is why it is so important to meet people where they are, to be patient, and to be kind. The work you are doing is difficult, but you chose it. The person you are working with is doing something much more difficult and they didn’t get a choice, so. Maybe they are cranky, maybe they’re stubborn, maybe they need things explained to them a few times before they really get it. They’re doing the hardest thing they’ve ever done, and it’s very possible that the only instruction book they have is you. They have put an incredible amount of trust in you. What a beautiful gift.
