I have no title for this

I was reading the Medscape Oncology pages today.  I received an email notification about a series of articles on palliative care and most of them were quite good.  There was a particularly interesting perspective on DNR choices and showing patients (who have terminal disease) CPR videos and how this impacted their choices for end of life care.

I started thinking that this was good information.  Then I started thinking that it is information that could be bureaucratically abused.  It worries me when I start seeing people use the word 'economics' next to 'end of life care.'  I think if we focus on quality issues and as long as we are honestly looking at quality issues then it is all ok.

Anyway, I started clicking around and then I stumbled across an older article and video about how doctors need to understand the needs of care providers.    I thought that it was a kind message and in watching the video portion I was thinking that Dr. Marshall seemed like a very kind doctor. 

He talked about how some care providers might secretly wish that they could just move forward and perhaps that is true.  I think that when a patient has been very sick for very long that this could be a very common feeling that a caregiver could have, even though it might be a conflicted and complicated and very painful feeling.  So I think he is correct in saying that medical people need to care for the caregivers.

I personally never had the kind of feeling that Dr. Marshall was referring to.  When my Dad died it was a process that took maybe a year and a half from diagnosis to his death.  I remember reading journal articles about his particular type of cancer, the relatively grim prognosis, the conversations I had with my Dad about the prognosis, the discussions that we had with his oncologist and how she told us not to read articles (!!) and on and on.  I think his oncologist also had a good heart.  Her card is still in my wallet, next to my Dad's funeral card.  I haven't quite figured out how to move either out of my wallet yet.

So I am not in the 'let's get by this process' camp.  I am more in the 'how in the world do I get by this' camp.  It has been two plus years now and when I saw Dr. Marshall's article it kind of came rushing back.  Grief is like that, I guess.  You never really can understand the pull of that riptide until you stop and understand how big that ocean is.  Oh well.

So the message from Dr. Marshall is correct.  Medical folk (and I am one) have to care for the care providers.  Everyone processes this stuff a little different.  Everyone will need a different kind of care.  Boy is this a tough issue.  Even when you are a medical person.


Cheryl said…
End of life issues are so personal. While I completely support primary care physicians getting time and reimbursement for discussing them with their clients, ultimately there has to be a time as the medical team that you step back and out of the decision. I remember a man with end stage COPD who kept coming back to the ER and being admitted to our hospital. He wasn't able to do any of his ADL tasks and could only sit on the EOB. But his wife made it very clear that they wanted no part of hospice- they wanted to keep coming to the hospital where they felt he was being best cared for. Options presented, decision made, and then it was just time to drop it.

I can appreciate your situation and hope that you have some peace... sometimes it takes a long time to come.

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