“Please don’t mention the word ‘hospice’ to my mother. We don’t want her to know Dad is dying.” I hear this from a son, concerned about upsetting his mom’s fragile mental health with devastating news.
“We are just going on your services to help my husband gain strength. As soon as he gets a bit stronger, we will leave hospice and resume aggressive treatment,” a wife tells me as her spouse enters the phase of actively dying.
And a dying man shares, “My kids are all around here, but I do not want them to find out that I am sick. I do not want them to contact me.”
Early in my hospice work, comments like these used to concern me. After leaving a hospice visit that included one of these types of conversations, I would replay it again and again, worrying that these individuals and families were making mistakes. They were not making the choices I would make were I in their situations. I never attempted to change their minds or even express my concern to them; I just worried.
Over the years I began to realize that my concern was an indication that I was misunderstanding my role on their healthcare team. I was simply a member; they were in charge of the entire team. Each of us is responsible for our own care. We decide who is one our team, what positions they play, and how they interact together as a unit. We even decide the game that is being played.
That may seem odd. Isn’t the game to help me maintain health and wellness? Yes, but there are vast numbers of ways we can conceive what health and wellness are; each of us delineates what they are for us. And we are constantly changing what our health goals are, sometimes because our circumstances change and sometimes because our beliefs change.
The metaphor of a team playing a game works well for many folks when they begin to consciously create the group of people who support them in their well-being. They are the manager of the team; there likely identify one coach or more and assign people to different positions on the field.
For others, though, another kind of image may work better. Perhaps they are the conductors of an orchestra. The various participants in their wellness each play a different instrument, frequently harmonizing with one another and sometimes making space for a solo action.
Maybe your team is more like a well coordinated restaurant kitchen, with a head chef organizing workers who perform a variety of tasks that result in various masterpieces.
A healthcare team can be like a small village or a movie set.
You get to choose.
And the metaphor matters when creating this team, because it determines how the team functions, what kind of leadership there is, the general climate of the work being done. Folks with competitive personalities may like to have a team to help them beat their condition, while people who value more harmonious atmospheres may determine that a choir is the analogy for their team. Still others will create a team that functions more like a dance troupe.
Taking care in creating the metaphor we use for our healthcare team is essential in deciding what kind of activities must happen on that team -- and which words, actions, and behaviors are forbidden.
This is true of the hospice patients and families whose choices may be different from my own. I try to remember that my presence on their team is usually very brief. I arrive into family structures and life situations that have been in the process of being created and solidified often for decades. It is not my place to take over and change anyone’s mind or their experience. My work is to show up, ready to fulfill my role. I stay faithful to that role and to the work of that particular team.
I still spend a lot of time thinking about the choices that are so distinctive from my own. Now, however, I do so not in an attempt to question anyone’s decisions about their own healthcare. Rather, I use these experiences to help me investigate my own arrangement, continually recreating and adjusting my healthcare team to be most beneficial.