Journal rdewald's Journal: Random thoughts re: what its like to take care of the dying. 15
If medicine is about treating sickness, then nursing is about helping people cope with being sick.
In hospice, as a nurse, I am out from under the prime directive of life extention / death avoidance. This is somewhat liberating intellectually, but it takes a long time to get used to it. My habits were honed over the years to always avoid death. Death was the flunking grade. Sometimes you faced it, but you could only be comfortable if you had literally exhausted every way you knew to prevent it, including all of your wild guesses.
In hospice, death is the goal line. You don't know when it is going to arrive, but you invite it in for tea when it comes. A few nights ago I sat vigil at the bedside of a patient who I believed was going to die at any moment. I was wrong. I sat there for four hours learning I was wrong, holding her hand, watching for the emergence of symptoms I could medicate or otherwise ease. She was exhibiting Cheyne-Stokes respiratory patterns, mottling, unresponsiveness. I reflected on the fact that in another context I have been in, as an ICU nurse, the emergence of any one of a number of symptoms I was seeing would be the cause to hit the panic button, to summon a small army of people from all over the place, to whip out dozens of tools and medications, basically to turn the scene into a flurry of activity.
Instead, I sat holding her hand, noting that her grip was getting weaker over time, scribbling notes on a note pad, and listening to the low, mournful howl of the late autumn wind whipping around the window frame. It was very peaceful and still, a deeply profound and moving moment of quiet compassion.
I called her family in from out of town, they came, but death didn't. I felt a bit like a failure for the misjudgement.
Of course, you're always eventually right. Everyone dies.
It can be a difficult decision for patients and their families to choose hospice care, sometimes its the only thing to do.
The world of the hospice nurse is about respecting autonomy and symptom control. I like to say to patients that I am going to work to do two main things: (1) keep them out of pain and (2) keep them in control of their circumstances. It's not really that simple, but that it a principle I return to in my thought processes very frequently.
The hardest thing I have been dealing with lately is the fact that sometimes the things I do to make the patient comfortable make the family uncomfortable.
A good example of this is the administration of morphine in the patient who is dying in respiratory distress. Morphine has a bad reputation among the lay public, it is seen as a drug of abuse, a drug of desparation, given only in hopeless situations to try to dent intractable pain.
That is sometimes true, of course, but this is a bit like characterizing the brakes in a car as a desparate measure, used only to avoid fatal accidents.
Morphine actually eases breathing, it is a good drug to relieve respiratory distress, particularly when titrated from relatively low doses. Usually hospice patients who die in respiratory distress have a long history of treating the underlying disease process and having their distress relieved by those treatments. In hospice, we're past that point. Their disease is no longer responding to treatment, so we're treating the *symptom* of respiratory distress, which means we do things like turn up the oxygen and administer low-dose opioids to people not complaining of pain. Death is on the way, we're just making a soft place for it to land.
For the family, whose only previous contact with morphine is in desparate situations, it sometimes is interpreted as if we are acting to hasten death, trying to just put someone to sleep, like a pet. There's acually no evidence that morphine (or other opioids), given in the way that we do it in hospice, either hasten death or prolong life. It simply eases respiratory distress, sometimes accompanied by a sense of mild euphoria and it also sometimes eases anxiety.
Think about it, what do you do when anxiety has been relieved and euphoria introduced? You lie back, close your eyes and relax. Picture that in your head. Picture every death scene you've witnessed in the movies or TV. See the association emerging?
So, I've just made the patient comfortable and the family uncomfortable. Welcome to hospice care.
There's a lot more to it. You get the usual assignments in people's minds we all do in our daily interactions, but the volume gets turned up on mine a little more. I have some patients and families who regard me as virtually beatified, a saint walking this ordinary earth. I no more deserve that than the creepy disgust with which I am regarded by those that associate me with the grim reaper, scythe in hand. The gamut runs between.
I can't predict it. Some patients I expect to like me don't, others that I expect not to, do. Some families like me while the patient doesn't, and vice versa. I regularly piss people off. I regularly disappoint them. I regularly am the only person they can turn to and ask about dying. Sometimes I am the only person to whom they have admitted they know they are dying.
Things have to get done. When someone needs something, I can't wait until it's convenient to get it done, I may run out of time. I sometimes do. I've found I'm better than I expect at predicting imminent death, but I am nothing near perfect at it. In some ways, the hardest thing is dealing with accepting my mistakes and shortcomings. That's really hard. Sometimes I'm wrong. Sometimes I don't know. Sometimes I miss things, signs, clues, harbingers of problems, which I really want to see every time.
Its hard. I love this job, but it's hard.
It helps to write about it. More later.
Controlled substances (Score:2)
Re:Controlled substances (Score:2)
But you're right, I don't prescribe medications. I call up a doctor, whom I work with closely (we talk 6-10 times a day and see patients together a couple of times a week), tell him or her what I am seeing, they do the prescribing, I administer and educate.
In many ways... (Score:2)
well... except for you don't dress in rags. I know, I've seen you.
BTW thanks now none of us can bitch about our jobs, unless b1inder becomes a coal miner.
Re:In many ways... (Score:2)
Please bitch about your job, there's a lot that great about what I do. I'm not unduly burdened. I just need to blow off some steam now and again.
my first four years in hospital care (Score:1)
Remember to allow yourself the release that the death provides the family. As a Nurse, it is a grey zone on how much to open yourself to the emotions expended by others without losing too much of yourself. Take time out to e
Re:my first four years in hospital care (Score:2)
comfort and care (Score:2)
i don't think i've ever shared the story of the night i spent with my mom two days before she died. it was a wednesday night (she died on a friday morning). there was nothing left to do. the final radical chemo treatment had no effect and the blast cell count was sky rocketing (over 85% by this time). my father was completely exhaust
Re:comfort and care (Score:2)
You did your Dad a favor, too.
One of the wonderful and most rewarding parts of what I do is that I get a chance to witness acts of kindness and compassion l
Re:comfort and care (Score:2)
i mean, my experience has been with nurses in oncology. i can't imagine how difficult it is for them, because like the doctors, they know full well that they are fighting a losing battle.
they know that many of their patients will lose. but they still do their job and constantly go above and beyond the call of duty. there were a few nurses that became genuine friends with my mom (even showing up at my mom's funeral)... they were just, well, amazing
Re: (Score:2)
Re:Good to read (Score:2)
Really.
Don't get too attached to that state. It will change.
Re: (Score:2)
Re:Good to read (Score:2)
I knew the intent of your post, you are right on all counts. Very busy.
We had Hospice (Score:1)
It may not take a saint or an angel to do the work that you do, but it does take someone very special.
Thank you.
^_^
Re:We had Hospice (Score:2)