We’re all end-of-life doulas. Given the trajectory of the human race, it is safe to say that we have more experience in direct service of the dying than not. Even Neanderthals buried their dead. Surely this was not with assistance of strangers who had never laid eyes on the person before but with the hands of kin, most likely having directly witnessed the death.
We’ve just gotten away from the practice, is all. And like anything else that we’ve lost touch with, it’s easier not to think about it than to realize we are no longer adept, much less connected with it. On the upside, according to the National Office of Vital Statistics, it has only been 73 years or so since death customarily took place at home. It should come back fairly easily, right?
Maybe. Maybe not. Staying with the same analogy, practice, valence of desire for outcome in relation to effort required has a lot to do with the answer. If desire to be of close and immediate support to the dying is stronger than resistance to developing the mindset and skills to do so, it is not difficult to learn how. End-of-life doula trainings are becoming popular enough that there is now a scrambling for recognition in the hierarchy rather than the slim pickings of just one year ago. I know this to be true based on 2017 searches for doula training, and recent internal correspondence from one of the original organizations providing it.
There is no pre-screening, licensure, or public health sanctioning for end-of-life doula training. I have been trained by, trained with and worked with doulas that are comfortable enough with death to do the work, but still have some hang-ups about it. I don’t know what mine are, but I probably have some, too. Just like you don’t have to be an Olympic Gold medalist to practice a sport, you don’t have to be an expert to practice support for the dying. You just need to have an interest in getting better at it. And unlike practicing to be a medal winning Olympian, death is an event every human is guaranteed to partake in.
End-of- Life Support 101:
It is not about you, unless you are the one who is actively dying.
Trust that there is nothing you can do or say to control or change what is happening.
Listen to the words being said. Pay attention to the signs being given.
Trust that the dying person is conveying what they do or don’t need.
Provide reassurance with discernment, nurturing, and gentle honesty.
Trust that you can provide best support by remaining steady, calm, and present.
Seek help from those with training, experience and knowledge, know expertise is not absolute.
Trust the only expert in the room – the dying.
Get out of your own way, that the dying may do the same for themselves.
Trust. Just trust.
Active death is a term widely used, and even more widely defined. Think of it as the body in a proactive state of organ shut down, as opposed to the notion that from the first moment our organs are working to support life independent of mother or machine, they are actually in the
process of moving toward break down. Like machines today, bodies are not designed to last indefinitely. Active death in a body is somewhat like the period when a vehicle is breaking down to the point that even with replacement parts, it is too far gone to last much longer.
Words and Signs
Words and signs, like active death, the breadth of possibilities cuts a wide swath. Two key things are appetite and swallowing. Rather than go the clinical route, which can easily be researched, here is the bottom line. When dying happens in stages, decrease then eventually, loss of appetite is likely, often accompanied by loss of senses that enhance enjoyment of eating. That is testimony to the built-in functionality of the human body, as further along the timeline of dying, swallowing can become difficult to the point of deadly. For the person not ready or willing to go along with this process, it can be a serious problem. Those who are dying may prolong or increase their suffering, stuffing a digestive tract that simply cannot break down, much less assimilate or eliminate what is in it. Further along, and perhaps worse, can be choking or contracting pneumonia from aspiration due to swallowing inabilities. Those who are caring for the dying may instinctively want to nurture them with food and drink, not only because of social conditioning and family traditions, but because it goes against an innate survival mechanism. It is important to note that preference for artificial feeding and hydration is just as important a consideration as resuscitation – larger topics to be covered in a separate blog.
Reassuring with gentle honesty. Pause. Easier written than said or done. Pause. Breathe before you think. Pause. Think before you speak. Pause. If you don’t know what to say, don’t say anything but that. Whatever is said, say it gently. Try your best to be quiet in your own head, no matter how fervently your brain might be working to find the right words to deliver at the right time and in the right way. The closer we get to death, the fewer words are needed. This is true for both the speaker and listener, be it the dying or the person with them. Even before slipping out of consciousness, speaking takes a tremendous amount of the dying person’s energy. There may come a particular surge of alertness and clarity, but that is still not the time for those in its presence to tax it. It is also not the time to offer false hope and empty promises. If it is not possible to remain present with what is happening as it is happening, do what feels most comfortable in terms of length of stay. Know that our sense of hearing is proscribed as the last sense to leave us, more testimony to the brilliance of organic body functionality. A sense less measurable but perhaps even more powerful is the sense of felt presence. Even when there is no apparent consciousness, there are strong indicators that presence of others is still felt. Reassurance may be transmitted as simply as feeling and thinking loving thoughts. If ever there was a time when quality beats quantity, this is it.
Expertise is Not Absolute
People don’t know what they don’t know. And when it comes to the process of dying, even what is known is not absolutely reliable or universally applicable. Going by the book, by what happened with other cases, by vital signs, by research results, by years of education, training, and experience, even by instinct, these all have their place in understanding and responding to what is happening as death unfolds. Even with all that, even in the most textbook of cases, there is still no reliable way of determining exactly when death will occur. It is possible, and some day may even be proven, that the dying person is the one to know that. Many have shared stories of their own near death experiences, as well as things witnessed with actual death of others, supporting the notion that if there is an expert in the room with regard to when and how death is to occur, the dying person is it.
Get Out of Your Own Way
If whatever you are doing, thinking, or saying to yourself, the dying, or others feels like that sounds, you may be in the way of death being able to unfold. If reading that makes you angry or feel like, isn’t that the point?!! Well, I’m surprised you’ve read this far. And I’m likely to spark even more reaction by saying, you’re going to need a lot more practice.
Dying is Work
It might look like they are just laying there immobile, but there is a lot of work going on. Physical changes may include sounds, sights, smells that are obvious, but on deeper levels there is the mind, and depending on belief systems, the soul. Like most other things in life, the more work and planning that went into it, theoretically, the smoother things will go. Practicing what I preach, preaching what I practice, I can’t know because I know that I don’t know what I don’t know. If I did, I wouldn’t be writing this right now…theoretically.
A New Term for an Old Practice
Sticking with what I do know, end-of-life doula is a new term for an old practice. Being present and skillful in support of the dying takes a desire to be there and at least some familiarity with the process. Practice does not make perfect. Practice makes familiar. Some are naturally given more opportunities to practice, others seek them. Through both, familiarity becomes comfort. With comfort comes an inner knowing that death cannot be truly known until we are the one experiencing it, and yet we still know enough to support those experiencing it. Hopefully, the greatest opportunity to do so is met by ourselves for ourselves, with support from others who know enough to trust in that, above all else.