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Patient Centered Care

“If You’re In, then I’m Out”

"If you're in, then I'm out." I see this routinely in the charts of patients referred to our outpatient palliative care program: “Will defer further outreach and follow-up as patient has been referred to palliative care.” “Patient to be followed by home palliative care, so no further follow-up needed.” “Patient interested in hospice care, but will defer discussion to palliative care.” A few days ago, a primary care RN told me, “if you’re in, then I’m out.” Read the rest of this entry »

Death with Dignity

It’s not often that I see a young patient* who doesn’t want any treatment in the immediate aftermath of a cancer diagnosis. In fact, I am so used to making a case for palliative and supportive care that the story of this patient nearly stumped me. The patient's friends had convinced the patient to come see me as a second opinion because they were concerned that the patient was delaying decision making about treatment. In fact, the patient was even talking about applying for Oregon’s Death with Dignity program for physician assisted suicide and had been discussing this with her primary care physician. Read the rest of this entry »

Tears on My Pillow

 

It could never go on forever.

 

Never does.

 

Not life. Not happiness. Not this. Not any one friendship.

 

Me?

 

I’m thinking this, only days after watching Bruce Springsteen sing elegiacally in Kansas City of his own city — by intimation, by extension, of his friendship with the dead Clarence Clemons — of a city, their city back then, of Clarence, lost now, of their friendship, their love, this, theirs, now, a city of ruins.

 

The Boss then slow-stepping sideways into lights lighting the far corner of the stage that had so long been the Big Man’s.

 

“Now, there’s tears on the pillow,” Bruce, so haunted himself, went on to sing, “…you took my heart when you left/ without your sweet kiss/ my soul is lost, my friend.”

 

And me, the palliative doc, watching, listening, feeling, hearing in Springsteen’s voice, seeing in his shadow, itself shadowing a cone of light, the ghost of one friendship past, the ghosts of life itself.

 

Bruce, all at once, without the friend of his life.

 

Me, counting the loss of so many lives in my life.

 

My mother. My father.

 

Just this week a much-loved uncle. And before, aunts, uncles, grandparents. Friends, too. And only this past weekend, yet another patient.

 

Call him Jim.

 

Just 50.

 

Wife, three kids, the youngest, a daughter, only a girl, herself just 11.

 

Beautiful farm, our outpatient nurse-practitioner had told me.

 

A house Jim had himself built.

 

His whole life, for all he knew, for all any of us ever know, ahead of him.

 

Only then, a year ago, at another time of thanks, to find himself ill, to find himself losing weight. Only weeks later, only days after a new year suddenly made unhappy, a pathologist telling the tale: cancer, and mere months later, by CT, cancer…cancer everywhere.

 

Jim’s father had died at 44.

 

Jim himself explaining that he, young then, had felt robbed by his dad’s death, only now, tears flowing, to have death thieve from his own children their chance to have their own dad there.

 

His college-aged daughter all too soon graduating without him at graduation. A son, in high school, no dad to see him through high school to college, to marriage, to grandchildren. That little girl, herself with her whole life ahead of her, only knowing her dad this long, these few 11 years.

 

“My dad is going to die,” that little girl had told our social worker some few weeks ago.

 

My own brother was himself 11 when our mother died of breast cancer, me then all but 30.

 

To this day, I cannot know what Patrick experienced then at 11.

 

What I remember, these 31 years later, is Patrick making our mom laugh, often over nothing, she so sick, he coming in from school, his smile, whatever words, her face all at once alit, until one day, one June, the light that had been our mother went out.

 

And after that, Karen and I making Patrick, my brother, our son.

 

And now little Maria, her dad gone.

 

Her big sister away at college. Her older brother coping as best he himself can. Their mom, the widow she could never have imagined herself being, certainly not now, never this young.

 

And me, all these years after my own mother’s death, often in those years contemplating what that had meant to Patrick back then, now thinking the same, wondering what thoughts now darken Maria’s thoughts these few days after her dad’s death.

 

And what would I, were I with Maria, tell her tonight…

 

Tell her that her life might be still be life; may yet be the life her dad would have wished for her; that some day, not any day soon, she may yet get through a day without thinking of her dad, of this, her loss…

 

Maria, only then, like me, these 31 years after I lost my mother, 18 after saying goodbye to my father, remembering…

 

Remembering what was.

 

All that love suddenly lost. Maria knowing, in the end, what I already know, that there is no end to this, this grief, even when life itself ends.

 

Back at Jim’s farm, his wife, their children, this week look out to the evening trees.

 

And me here this evening, not so many miles from that farm, wishing that family sweet veils of mercy, those of which Bruce sang in that same song, those veils drifting through those same evening trees. Bruce’s next question, as for me once, for my brother, too, for Jim’s wife, for his children, the question that is now, has always been…

 

“Now, tell me how do I begin again?”

 

 

Enough with the crystal balls!

I’m puzzled at how most clinicians I work with have somehow learned to use the crystal ball metaphor when discussing prognosis. As in “We don’t have a crystal ball” (so we can’t say how much time you have left). Really? Read the rest of this entry »

Pain “management” means…..what?

A patient's son tell JPM Panelist Kennan Moore the following when offered palliative care for his seriously ill father “the support you’re describing sounds wonderful, but Dad is still able to sit outside with Mom on the patio, go to church, and bathe and dress himself. He still enjoys his life and is not ready to be bedridden and our family supports this goal.” Where is the knowledge gap here and how can we bridge it? Read the rest of this entry »

Encourage the Struggling Providers

What do we do when our lives are so full of suffering that we just cannot hear about it any more? As palliative care providers, it is our job to join with patients and their families in their agony and sadness. We do this several times a day, every day. But what happens to us and our work when we have had our fill? Read the rest of this entry »

Through the Therapeutic Window

Through the therapeutic window comes in a shard of light. And in that light is hope, is bliss, is warmth. And a suggestion of an opening into a place that is kept hidden oftentimes from oneself and then can only manifest through others. Read the rest of this entry »

“Olympic Moments in Palliative Care” by JPM Columnist Ryan Weller

Like the Olympians, successful palliative care practitioners are well trained and mentored. Unlike the Olympians, our Olympic Moments are unscheduled. Read the rest of this entry »

“You just go ahead and thump on my chest!” by JPM Columnist Donal Gordon

“You just go ahead and thump on my chest,” she tells me with a smile, after I tell her all that. And I tell her okay. Who am I to say to her, that even at 93, she doesn’t deserve this.... Read the rest of this entry »

How it all began: Founding the first US free-standing pediatric palliative care center (Guest post by Dr. Barbara Beach)

It began with Jim. He was a big-hearted, courageous young man dying of cancer, and I was a young pediatric oncologist at the beginning of my career, not 10 years his senior. Jim simply wanted to die at home, in the company of his mother, away from the hospital where he had spent so many weeks and months battling his disease. Yet as hard as I tried, I wasn’t able to make his final wish possible Read the rest of this entry »

Reminder to Self

I’ve been thinking a lot about advance-care planning lately. (For the last few years, truth be told.)This isn’t just advice for Everyone Else. It applies to me, too. It’s not that I’m unwilling to think about something happening to me. In fact, I worry more about my wife in a situation like that. If something happens to me, she wouldn’t have my written wishes to follow. To say she would agonize would be an understatement. Read the rest of this entry »

JPM Honors All Mothers Worldwide: Happy Mother’s Day

The unconditional love and compassion that is the cardinal aspect of a Mother's expression of her caring is also a key premise of palliative care. We take the opportunity today to thank all mothers worldwide for teaching us the caring and compassion we show all our patients and families. Read the rest of this entry »

Advancing by Example

This week we challenge those providers/those providers that you work alongside to consider how encouraging clients to complete Advance Directives would be different if you had this personal experience. Would you be more likely to discuss this option if you too experienced the emotions attached to thinking of your final days? Read the rest of this entry »

Patients Encourage Patients to Complete Advance Care Planning: 90 second video on National Healthcare Decision Day 2012

Watch this 90 second video about National Healthcare Decision Day, April 16, 2012. In this patients advocate enthusiastically for advance care planning. There goes another myth that patients resist completing advance directives. Read the rest of this entry »

Can we talk?: Veterans participate enthusiastically in National Health Care Decisions Day

April 17, 2012, will be the fifth annual National Healthcare Decisions Day. The goal of this nationwide initiative is to ensure that all adults with decision-making capacity in America have both the information and the opportunity to communicate and document their future healthcare decisions. In the brief video posted, Veterans advocate enthusiastically for completing Advance Care Planning Read the rest of this entry »
Can We Talk?
Watch and share this five minute video about the need for prophylactic end-of-life conversations. Laura Heldebrand, an ICU nurse tells her mother's story.
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