My little brother is leaving for South Sudan this afternoon. Those of you who pay attention to the news (admittedly I usually do not) know this isn’t exactly the safest place to be right now. His departure was swift and has left a fraction of my large nuclear family in various stages of worry and anxiety. Although all are supportive, I suppose some would prefer he found employment in say…Tampa.
This whole ordeal sparked a debate between my husband and I about whether people should avoid doing things simply because they make their loved ones uncomfortable. A discussion that was punctuated by a phone call from my little brother to discuss “his wishes” in the event that something were to happen to him while he’s away.
Fortunately his wishes are simple, I guess that’s one good thing about being young and traveling light, but just the same he waffled on a few things out of concern they might upset the family. I said, “Owen, these are your wishes, no one is going to take issue with them. No one would discount them!” and then I took a second to ponder whether this was actually true. In his case I feel fairly sure it is, but I can’t ignore the fact that in the 7 years I’ve worked in death and dying I have seen a good number of end-of-life wishes trampled on.
From DNRs, to organ donation, to funeral arrangements, to the disposal of belongings – sometimes people just find themselves unable or unwilling to comply with what their loved one wanted. Sometimes it’s due to circumstance; sometimes they just don’t care; and sometimes it’s the subtle justification that their deviation is actually what the individual would have wanted. It all just makes you want to step back and say, respect peoples choices PEOPLE – respect the way individuals want to live and respect they way they want to die – even if you don’t like it. (Of Note: I recognize some choices are definitively bad like murder, drinking and driving, and bangs. I give you permission to not respect choices such as these).
Recently Bill Keller wrote an op-ed piece for the New York Times called ‘Heroic Measures‘. In this piece he contrasted the way Lisa Boncheck Adams has publicly waged war with breast cancer via her blog and twitter feed to the way his father-in-law died in the peaceful and nurturing hands of his palliative care team. I first heard about this piece in the context of angry tweets from those who interpreted Keller’s opinions as condemning individuals who choose to leave this world swinging (and shouting). Then instead of going to the source I read this article, so by the time I dove into Keller’s actual piece I was fully prepared to feel outrage.
I’m afraid I’m missing some obvious yet over my head sub-text here and thus my conclusions will brand me dim but I was not at all enraged and I walked away a little puzzled as to what all the fuss has been about. Aside from the odd decision to contrast the way his father-in-law died to someone who seems to identify herself as living with cancer – not dying, I thought Keller’s piece made sense. His ultimate point was not to criticize Lisa Boncheck Adams for aggressively treating her cancer and talking about it, but to point out that those individuals who lay down their swords and accept death are just as brave. The concern being that by not giving each approach its due respect we are setting up those who face similar choices (and those who love them, influence them, and forever live with said choices) to feel like quitters when they don’t choose to continue treatment in the face of grim prognosis. The way I understood it, Keller’s message seems pretty much in-line with growing sentiment that individuals facing terminal illness should be given all their options and be encouraged to choose how they want to live and die. Home, hospital, hospice, or treatment – all choices are okay and worthy of our respect.
Personally I love that Lisa Boncheck Adams is inspiring, informing, and comforting others by talking about her experiences. Ultimately her choices are none of my business, but I respect them and admire them nonetheless. She understands her life and her illness and she (I imagine together with those who love her) is making the decisions that are right for her. There is a giant spectrum of options when it comes to dealing with illness, death, and grief and all are okay. Each individual experience is different and based on these experiences each of us must make the decisions that are right for us, in living and in dying. Whether or not our loved ones like our choices is irrelevant, we just have to hope they love us enough to respect, accept, and see them through.