Honoring others at the end of life

If you’ve been reading my blog for any length of time, you’ll have read a few posts about handling the loss of friends in the Stage IV Metastatic Breast Cancer (MBC) community. Some of the posts that come to my mind are: Living with Loss, On Surviving the death of Friends, and To Bear Witness. I’ve written a good deal about this topic because it is something I think about a lot because it is something that comes up a lot and because it is hard. Really hard.

Recently a friend in the MBC community shared a bit of a rant about those actions/behaviors of others that are making her end of life experience more difficult. Her post stopped me in my tracks. In sharing her experiences, she exposed a fundamental and valuable truth — what we do “for” others is so often more about ourselves than those we are trying to help/support.

How sobering.

Now let me take two steps back and say that nothing in my friend’s justifiable rant was about anyone’s intentions nor am I suggesting that anyone consciously behaves this way. What I read and heard from my friend was that everyone around her needed to take a step back and ensure that what they were doing was actually what she needed and I think that’s a really hard thing to do. Death and the end of life experience is pretty triggering for those of us who carry the same weight of a terminal diagnosis. Anytime I see someone struggling as much as this friend is, I want to DO something as clearly others in her life wanted as well.

And so I’ve compiled below the lessons I’ve gleaned from my friend’s postings …

First, my friend did set some boundaries about communication. She sent a group email saying please do not text me, communicate with me via email; additionally, she set a point person to be in charge of making sure information about her treatment and end of life choices is disseminated and questions are handled. While the people she was communicating with did not honor her requests/boundaries, I think it is vitally important that we express as clearly as possible the method of communication and set up a point person to help field questions. And those of us on the outside need to honor those requests, even if we think the requests aren’t reasonable or valid or whatever.

The person experiencing the trauma is the one who sets the rules. PERIOD.

Second, as my friend started talking about her end of life options, she began receiving “battle messages” from various people, even after she asked for support focused on “holding space.” For some posts I’ve written on holding space if this is a new concept for you, check out my posts here and here. Here’s the bottom line: when someone has a serious illness and has made a decision on what they are going to do with their treatment or not, don’t tell them to fight. The person making the decision has considered the options open and attractive to them. To suggest otherwise is demoralizing and dismissive of their experience. While this is excruciatingly hard for me, we have to remember that it’s not our job to fix anyone else, just to support them.

Third, when someone asks for something specific, don’t do something else. My friend asked for help with rides to and from chemo; her caregiver isn’t always able to assist her with rides and it’s hard for my friend to drive herself. Instead of meeting this need, a friend dropped off food in such a way that it made it hard for my friend to get to it. While the act might have been meant kindly, it didn’t help my friend and she’s the one who gets to make the rules.

Fourth, responding to text messages, even just a link or a meme we think might lift another’s spirits, takes energy. When someone is struggling or entering the end of their life, their energy is precious. The energy a person has should be allocated in the way they want and everyone is different. Asking questions and making sure your communication is desired is key. Remember, communicating with someone who is dealing with a trauma or crisis needs to be about them, not about you. I think it’s always a good idea to include a note that a response is not expected if you do send something to a person facing a really difficult thing.

Fifth, even if we aren’t able to interact with our friends who are struggling, bearing witness and holding space for them doesn’t mean we have to be passive. While I’m pointing out all the things we shouldn’t do, there are still some things we can do for ourselves that don’t impact the person we love. These things we can do for ourselves means that we are not trying to get our needs met through the person struggling and perhaps results in thinking twice about bothering that person.

However you choose to face the end of your life or choose to support someone facing the end of their life is so very very individual. At the same time, there are some universal truths in this uniquely human experience. Some call this time period sacred or precious since those last days/weeks/moments can be profoundly special, stripped of all the distractions of life. Supporting someone else and bearing witness to this last living transition is not easy and yet doing this well is absolutely worth the effort.