'After Diagnosis, Determined to Make a Good Ending'

Edward Kennedy's approach to the end of his life:

“I’m still here,” Mr. Kennedy would call colleagues out of the blue to say, as if to refute suggestions to the contrary. “Every day is a gift,” was his mantra to begin conversations, said Peter Meade, a friend who met Mr. Kennedy as a 14-year-old volunteer on Mr. Kennedy’s first Senate campaign. 

Some patients given a fatal diagnosis succumb to bitterness and self-pity; others try to cram in everything they have always wanted to do (sky-diving, a trip to China). Mr. Kennedy wanted to project vigor and a determination to keep on going. He chose what he called “prudently aggressive” treatments.

'No other'

My goal is to write about palliative care from the perspective of my very limited experience of the phrase. The vein of material isn't exactly rich yet. So far, I haven't gone much beyond accepting more intensive home-nursing services and letting myself articulate palliative care for me personally as a possibly beneficial idea. Going even that far has been hard.

But I'm still upset about the political death panel distortions, and Pauline Chen has a nice column about some of the difficulties and shyness on the physician's side of the conversation, so I thought I would link to that briefly and save my own chaotic views for later. My thought is that here, again, is a place where carelessly applied cancer metaphors can cause so much unnecessary pain. It's easy to think about ending curative treatment of tumors as "giving up" -- but isn't shifting your approach to an illness that isn't getting substantially better more akin to letting go? Or a dozen other phrases that any person or family in the midst of this situation could dream up?

Talking Often, and Calmly, about Dying:

As someone who has written an entire book about the difficulties of caring well for the dying, I find all the fury aimed at halting support of end-of-life care discussions more than a little ironic. Why? Because the truth is that most of us need all the help we can get to start these difficult conversations. The truth is that we never talk or even want to think about talking about dying because we are afraid of dashing our loved one’s or our patient’s hopes. The truth is that we fear — even abhor — these discussions because we believe that by talking about dying we are giving up.

Chen also describes some research findings alluded to here that I still find shocking: Only about one-third of terminally ill patients have discussed end-of-life care with their doctors.

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This is a narrative that works well with Chen's Web essay. It's tough, but very smart and and informative. My pullquote doesn't really do it justice:

His coolness is his armor. “I do not feel obligated to be sort of eternally involved with the experience of death,” Dr. O’Mahony said. “It’s not healthy to be there all the time.”

But the danger is that “death gets to be banal,” he said.

“Do you know that poem by Dylan Thomas?” Dr. O’Mahony asked with a faint smile. “After the first death, there is no other.”

THE OBLIGATORY DISCLAIMER: Let me reiterate that I'm absolutely not sick like the people in these articles yet, and my doctors agree. I am not using "palliative" as a euphemism for "hospice," "terminal," etc. While I am obviously not a well dude, the fact that I had a decent scan recently and that some things are going pretty well for me at the moment are giving me the strength to look hard at things that scare me.

A touch

My local oncologist, Dr. S, will never be my friend, but I respect her deeply. She's prim and organized, qualities mysterious to me. She laughs at my jokes, which I appreciate. Beyond this, though, she maintains scrupulous personal distance. She's not unfriendly, just aloof.

And yet, when I fell into crisis at the end of June, it was her I was desperate to see.

I throw around a lot of scary, chewy words and ideas here. Cancer has hyped up my emotional expressiveness in ways very good and very bad. But I think this truly was a crisis. I had an almost nonexistent appetite, and eating was a painful chore because my mouth was peppered with little sores and sensitivities. Pounds were sluicing off my too-thin frame. I couldn't sleep at appropriate times. My pain felt uncontrollable.

My breathing, which hadn't been easy for more than a year, had deteriorated slowly but relentlessly. I took the problem for granted even though I was dimly aware that it was neither normal nor acceptable, even for a cancer patient, to be unable to walk from the living room into the kitchen without hunkering down to pant some place along the way.

Some evenings, as pain seemed to drip from the tumor in my hip like poisoned rain and pool in my lower leg and foot, I would just sit and sob as L. tried everything she could think of to help until she, too, was sobbing. My physical problems were formidable, my mental issues insidious. The constant strain either put me into a major situational depression or, more likely, converted a longstanding chronic depression into something fiercer and more debilitating.

I somehow knew I needed Dr. S, and L. somehow got us an appointment almost instantly. As I slumped in a chair and mumbled, Dr. S grasped the essentials and quickly made a sensible and comprehensive plan. The appointment ended with two profundities and a pile of prescriptions. The first profound thing was a referral to the palliative care unit of the Visiting Nurse Association, which I am going to be talking a lot about.

The second was that she touched me. I couldn't recall Dr. S ever doing that outside an exam or handshake.

For some reason, as she talked plainly and kindly about how long and hard my illness had been (thoughts I try not to let into my mind), she felt moved to conclude by reaching out awkwardly and patting my shoulder. I was out of it, but engaged enough to be surprised.

Her hand, I felt at the time, almost burned with portent.

Good or bad I could not say.

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I'm hoping to write about a half-dozen posts about the experience of starting palliative care while still pursuing a curative option, brivanib. Even though changing focus to palliative efforts is nothing like entering hospice, I found the decision fraught and worth writing about. Posts in the series will be tagged "palliativecare" at the bottom. And need I even say that L. was way smarter about this long before I was?

A sad thing

The matter is basically resolved, so it's silly to post here, but I wanted to say something about the "government death panels" that have been around the news.

First, just how stupid do they think we are? A couple G7's in suits weighing granny's value to society and cutting off or reducing her medical care on that basis. Yeah, right.

What the provision would have done was allow Medicare to pay for end-of-life counseling, including things like the development of advance directives, which help your chosen representatives make choices in accordance to your wishes when you are too sick to make them yourself.

I have been thinking about palliative care a lot -- in part because I have signed up for the home-nursing service's palliative care unit even as I continue chemotherapy -- and advance directives are a key part of that process. I actually did mine quite some time ago, as did L.; in my case it may be time to revise some of my answers, but something is most definitely better than nothing.

It would be great, of course, if everyone were cognizant of the necessity of planning for not being immortal, but since most folks are highly resistant to the simple fact that they too will die one day, a few bucks spent helping folks to make their choices and preferences legally enforceable (hopefully) seems worthwhile. Note that there really isn't anything in the bill for the doctor or social worker here; removing the cost, as I see it, almost exclusively helps the patient, who may feel reluctant to pay to enter a difficult conversation. (The time we spent with a social worker going over the forms was covered without discussion by our cancer center; we paid for legal documents like powers of attorney when we had our lawyer draft our will.)

As I said, though, this is moot: No advance directives in the bill. But I still find myself dispirited by the crude, fear-mongering language used by opponents of the provision, as well as my sense that it was picked as a target purely as a matter of opportunity, not on any rational policy grounds. Even worse, this is an expensive target; expensive (as documented by studies) in terms of end-of-life spending, but, even worse, expensive in terms of human suffering.

It's been a quite while since I did my advance directive, so I may not have much to say about that, but over the next couple weeks, I am going to document MY experiences with opting to use some palliative care services long before they are strictly necessary. Summarizing my responses with some writerly tough love, my feelings are good, bad, intrusive and emotionally charged. Of course, I wouldn't feel right if I didn't expand upon that quite a bit.