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Archive for 2012

DNAR: Do Not Attempt Resurrection

I had never thought about the confusion the public might have between resuscitation and resurrection until I saw mention of a poem in October by Dr. Brenda Butka. Read the rest of this entry »

Men and Women

Maybe you've noticed it. I have, many times. In a room where someone is dying, and people are gathered around, notice where the women are and where the men are. Read the rest of this entry »

“Enlighten us, but make it quick”

I have been getting behind in my blogging this fall. It has been a busy time. One of the extra things I took on that added to my load (although it was supposed to be fun!) was an Ignite talk about palliative care. Read the rest of this entry »

And Those You Love, Losing You

“What got you into the hospital?” I ask, already knowing what I know. “Cigarettes,” she tells me, she surprising me, she not a breath to lose, her not losing a breath. She’s in the ICU, hardly the first time, she only 52, at least one daughter, O2 Sat something like 58 when admitted, pulmonologist tells me maybe a year, me asking her what to do if her heart stops, she stops breathing, she telling me, “Let me talk to my daughter.” Read the rest of this entry »

Death, Its Breath, Always Breathing

“I don’t want to die,” she tells me. Death, its breath, irrespective of age, of anyone’s age, breathing then, always breathing. Read the rest of this entry »

Not Ready

The room was absolutely peaceful. The woman was probably in her forties, with some early gray hair. She sat silently by her mother’s lifeless form. She spoke quietly, of good times.
“I’m just not ready to let go of her,” she said without looking away.
We never are. There seems to be no opportune time for anyone else to die. She was having great difficulty notifying her siblings, all scattered in many states, and busy with their lives. Yet, she was not angry, nor bitter. Her way of accepting this loss spoke of her relationship with her mother, and of the way they had dealt with everything else to this point. She began telling stories of float trips, and other outdoor activities that brought them much joy. This is how it is supposed to be. How will you finish? Without being morbid, can we prepare others for our departure by recognizing that it is inevitable? Perhaps there was little left incomplete between them, making this great difference in how her daughter handled her death.
From her: I heard that there is much to be thankful for in our unique relationship to our loved ones. It doesn’t matter how others do it. It only matters how we do it.

“Drizzly November”

While cleaning out the desk drawers, I found a page with scattered words: DRIZZLY NOVEMBER….SOUL….MELVILLE….GRIEF I looked up “drizzly November” and found a passage from Moby Dick by Melville. I never finished reading the book or watching the movie. The passage in Moby Dick apparently refers to a feeling of grief experienced by the character. He goes to sea to resolve the emotion. Read the rest of this entry »

Happy Birthday thanks, in part, to palliative care (but not what you think!)

I recently went to a wonderful birthday party. A good friend was celebrating both a milestone birthday and the fact that she is cancer free for over 2 years now. Partying with her and her family reminded me that she’s a great example of a palliative care story with the kind of happy ending we don’t often hear about: the one where the patient recovers and lives.

She had just had twins when she was diagnosed with an aggressive form of lymphoma. She went into remission after standard treatment, but then the lymphoma came back. The prognosis wasn’t encouraging but no one, least of all I, was thinking hospice was the right next step. This was a mother of 3 small children who had every reason to want to try to live. She agreed to a stem cell transplant and was hospitalized for the treatment. While there, she had very bad nausea and was losing weight, something she didn’t need. She was also in both physical and emotional pain. At my suggestion, she asked for a palliative care referral. When her physicians heard that, they were confused because “she wasn’t dying.” She agreed, and told them that she needed help to manage symptoms so that she could tolerate the treatment to help her live. A wonderful palliative care nurse saw her and got her symptoms under control. She also had the chaplain visit and arranged for her to vote by absentee ballot. My friend survived the stem cell transplant and is now chasing her children around and being a wife, mother, and member of her community.

The point of this story is that she’s an example of what we mean when we say that palliative care is appropriate at any stage of an illness and concurrent with curative treatment. Perhaps if we told more stories like hers, where there’s this kind of happy ending, rather than just stories about good deaths, people would be inclined to think of palliative care more favorably and to ask for it sooner. She’s living proof!

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?”

 

 

Happy Thanksgiving!

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Precious Moments: A Self Reflection of Intimacy at End of Life

A journal article I read prompted some very strong feelings surrounding End of Life Sexuality/Intimacy for me as both a consumer of healthcare and provider.  As a former Hospice and Palliative Care Social Worker I am recalling my initial assessments along with the more routine discussions I would have with patients and their significant others.  We would discuss all things from finances to activities of daily living; however never did we approach intimacy in great detail.

The more I read the article and began to think of my own thoughts on intimacy I decided how important this topic is to incorporate in our daily practice.  The questions that came to mind and were validated as I read the article were: Would I be scared to touch my loved one in an intimate way? Would it help to have permission from the healthcare team to explain what is okay? Not okay? Would they judge my loved one and I shut the door and locked it so we could be intimate? Would someone help me find other ways to be intimate if I could not do the things we were used to?   It dawned on me that I had not been as supportive as I thought I was to my clients in the past.  These were tough thoughts and truly even more than I wanted to disclose on this post but I felt very necessary to share.   Before you consider your client’s thoughts on this topic—please take a moment to think of your intimate needs from direct touch to sexual desires.  How much of this would change if you suffered from a terminal illness? How much of these needs would you still desire if you had a terminal illness?

Can we as providers push ourselves beyond our comfort level to see that ALL end of life needs are met? The American Journal of Hospice & Palliative Care article provides an excellent start perspective on the topic for providers and can serve as an education tool on enhancing all aspects of end of life care.  We work very diligent to provide the best care to our patients and their families and we build some of the strongest rapports in healthcare.  This should be maximized by helping clients address their most intimate needs including intimacy itself.   I encourage you to read the article and decide how you may enhance your practice, whether at bedside or in the home of those clients that are facing end of life.

Avastin for Palliative Management of Brain Tumors: A Victory for Patients and Providers

In 2009, the FDA gave accelerated approval to avastin for use in recurrent, high grade brain tumors (glioblastoma and anaplastic astrocytomas). Avastin is an anti-body that removes a circulating protein thought to help tumor make blood vessels: not traditional cytotoxic chemotherapy, which directly kills cells. As clinicians began to use the drug in brain tumor patients, some interesting observations were made. Read the rest of this entry »

Thanking the Messenger

It never fails to catch my attention when a patient, upon hearing of his or her own disappointing diagnosis or prognosis, thanks the provider who delivered the news. Just last week I witnessed this as a patient was told by a physician he’d only known for three days that he had just weeks to a few months to live. After a few tears were shed, the patient smiled, looked his doctor in the eye, and said, “Thank you.” What do you suppose he was thankful for? Read the rest of this entry »

Dr. Ira Byock’s Opinion on Physician Assisted Suicide

Where do you stand on the issue of legalizing Physician Assisted Suicide? Watch this special 5 min video by Palliative Care Pioneer Dr. Ira Byock Read the rest of this entry »

Taking Myself for Granted

To me, meeting a patient, whether for the first time or for follow-up, has nothing to do with the MD at the end of my name, but instead with the life I’ve lived, the experiences I’ve had, the losses I’ve so far survived, all of which I bring to every patient encounter, most of which preceded my entrance to medical school at the age of 49. 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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