A profound thing happened to me last year: My mother in law died. She was in her late 80s and had suffered from various ailments, and towards the end she couldn't move or talk or barely eat. I found that our family wanted to her live for many more weeks, but I saw her there lying helpless, and wondered what kind of life was that. I would not want to "live" that way. It wasn't living. It was the end of a life well lived; and it was compassionate to let her go. The holding on to her was close to torture, but I understood why we wanted to hang on. Perhaps, I thought, with my mother it would be different.
Well, it wasn't. My mom fought cancer 3 times, and won - until the cancer returned and spread to stage-4 lung cancer. At this point (the diagnosis came in early May), she was on a feeding tube full time, her neck was bent nearly perpendicular to her body due to osteoprosis, and she was so weak that she couldn't send emails anymore (our primary method of communication - due to tongue cancer surgery, she couldn't talk as clearly as she used to). My brother and I heard the news, that the docs would try to see if she could manage any treatment, but we each on our own started preparing ourselves for her inevitable passing. As hard as it was, we knew she beat the odds for years; I felt like it was borrowed time and tried not to take it for granted. It was tough, and devastating.
Unfortunately the doctors were not very upfront with my parents, and they actually thought Mom could take this cancer on, too. Then, about a month ago, she went into respiratory distress and the medical team at the hospital where she was staying intubated her. At this point, my dad called and asked me and my brother to come out and see her - he didn't know how many days she had left.
What happened next was excruciating. Despite painful suctions of her lungs, not being able to get up to use the restroom, and being artificially kept alive, my mom fought her passing. She pushed her self to stay as alert as possible, and refused to make a decision to remove the ventilator (and in her Fentanyl haze, I'm not sure if she knew at first what the situation was - and can you blame her for not wanting to decide on the day of her passing?) A doctor pulled me aside and said he was surprised she was even awake - most patients in this condition, he told me, are unconscious. ("Welcome to my mother," i wanted to say - the toughest lady I know.). Had they not intubated her in the first place, mom would have passed due to the natural result of her cancer, but in the heat of the moment, the medical team just did what they're supposed to do - keep someone alive, at all costs. And for the next two weeks - yes, two full weeks, many days more than the medical personnel predicted- mom lived in various states of fear, panic, stubbornness, anger, and, I'm glad to say, at least some moments of alertness and reminiscing - but as the days wore on, the pain and discomfort got worse.
Finally the team told her they had to remove the ventilator by the end of the second week. She risked infection; there was no more hope for her. The ventilator was prolonging the inevitable. We were exhausted and overwrought - you cling to your loved one, but yet it kills you to see them suffer. But she got what she wanted - to be with us for two more weeks. Would it have been more peaceful if they had not intubated? I think so. Had I wish that happened? Maybe not, because we have notebooks full of her final words that we wouldn't have had. But the point of DNR (do not resuscitate) orders, and for doctors to be honest with their patients about inevitable outcomes, is for these Sophie's Choice issues not to arise.
Finding peace in death is something our society needs to work on. We know intellectually it is just as natural as birth, but of course we fight it instead of welcome it, because it means saying goodbye. But fighting to survive when survival isn't possible, or hanging on to someone when they are just a shell of themselves, proprogates suffering and distress. It's undignified and traumatizing, and it's really because our culture does not respect death.
Am I petrified of death? I am. This experience taught me to start getting right with it; to start making peace with end of life as much as possible. I hope for doctors to be compassionate but frank with their clients, so they can start readying themselves for the reality of the situation, and prepare their family and make arrangements. I wish we had been given this gift.
I did some research and there are some really interesting organizations and media on the web as a reference: Death Cafe, which has events across the country for in-depth discussions; the energetic and witty Ask a Mortician; and this really helpful post on Lifehacker.
Do I want to live as long as I can? Hell yah. Do I want to go with peace, acceptance, and dignity? Yep. So I'm going to start making peace with it now.