A Good Death?

Living can be hard. Dying – it turns out – can actually be harder.

I am grateful to live in a right-to-die state. If I am stricken with a terminal illness, I won’t have to put myself or my loved ones through the hell that is waiting for death and eventually succumbing to one’s illness. I can choose when I’ve had enough, say my goodbyes, and go.

Of course, it’s not that simple. There are many legal and medical hoops one must jump through to take advantage of this option, but it strikes me as a choice I want to have if those circumstances arise. It strikes me as a way to diminish, or at least curtail, the suffering. Mine and my loved ones’.

I’m a huge fan of less suffering. It’s not so much personal cowardice, as it is a belief that the path of less resistance is, in fact, a worthy one.

I am bearing witness to the death of my youngest sister in New York, a state that does not offer right-to-die options. Her hospice caretakers are keeping her as comfortable as possible, of course, but this method has fallen short.

Earlier this week my sister completely lost her ability to communicate. She lost her ability to speak almost a year ago, and this past week she became too weak and cognitively muddled to type on a device, write by hand, or even point to diagrams on a chart. This is a huge problem when the patient’s health is declining and unexpected issues kick in with each new day.

The day arrived when, in order to communicate, my sister had to rely on facial and body expressions. She opened her eyes wide in what can only be described as desperation, a guttural cry emanated from her throat, her hands forcefully attempted to push us out of the way so she could get out of bed. She was attached to too many tubes and was too drugged to be trusted on her own two feet to allow this, so we spent two days restraining her, reminding her about the tubes, telling her it was unsafe for her to get out of bed. She was persistent though, and finally fell to the floor one night, in an attempt to do what? It was a guessing game, and clearly a source of utter frustration for my sister that we couldn’t figure it out. Couldn’t we tell what she needed?!

Sadly, no. The mystery was eventually solved, but it took us 48 hours to figure it out; 48  long hours to reduce my sister’s distress and discomfort. In the meantime, she suffered. We all suffered watching her. We all experienced acute frustration.

As someone who loves her and abhors seeing her in pain or distress of any kind, these were the hardest days so far. I understand the intention and goals of palliative care to make the patient “as comfortable as possible,” but damn it, sometimes that’s just not enough.

Christmas Day she was able to walk – assisted – to the activity center in the hospital to attend holiday festivities. She danced to and thoroughly enjoyed the live music.

Today [I’m writing this Friday night, January 4th], 10 days later, she is on a morphine drip and round-the-clock Ativan (an anti-anxiety medication).

Food – which was administered through a tube into her stomach for the past several months – was stopped on Thursday.

She is no longer tracking the activity or sounds in her hospice room with her eyes. She is slipping from us. The end is near.

Is this going to be a “good death”? I can’t say. What I can say is this is not the death I would have wanted for myself. I would have wanted this to be over and done with days ago. But that’s me. I’m not saying I wanted her to die sooner; but I am all for her suffering ending sooner.

To my sister’s credit, she never wanted to be intubated, and she has had a “Do Not Resuscitate” (DNR) order in place since shortly after her ALS diagnosis. She was a Licensed Nurse Practitioner, so perhaps she knew a little something about how traumatic intubation and resuscitation could be, how it might only serve to prolong the inevitable. She didn’t want any part of that. I am grateful to her for the courage it must have taken to make those hard choices.

Having lost two loved ones to suicide (my son 8 years ago; a boyfriend 36 years ago), you might think I’d be totally against anyone choosing to die, but in my mind there are circumstances that warrant an approach other than the one we traditionally take when facing a certain death due to terminal illness.

Our medical professionals are trained (and therefore we are conditioned) to prolong life, whatever it takes. In my mind – and I know there are those who will not agree – there are times when this feels more cruel than proactively taking measures to end the patient’s misery.

I love my sweet sister, “Nikki” (a family nickname). It has been one of the most heartbreaking experiences of my life – watching her steady decline, as she becomes less and less of who I knew her to be, and watching my mother bear the unbearable. It has also been an incredible honor, to be present with her as the end of her life approaches.

I wish for my dear sister a painless, effortless, peaceful transition to whatever comes next. If there is a heaven, I know there are a halo and a set of wings with her name on them.

I wish her a good death.