What happens when the family fully expects a loved one to die, and he doesn’t? One family gathered around the bed of the husband and father, confirmed one more time that he didn’t want the “forced air” mask on any more, and said their goodbyes. After 18 hours, he’s still here. Read the rest of this entry »
During a recent storm, I chose to listen to music played by cellist Yo Yo Ma.
The music was written by John Tavener and entitled “Wake Up …. And Die”.
This appears to be a contradiction. Rather than make distinctions, the notes discuss the connection and similarities between living and dying. The music is a combination of solo cello and cello with orchestral accompaniment. While listening, I was not sure which musical phrases referred to the aspects of living and which referred to the aspects of dying. I read the program notes. I listened again.
I began to think about the end of life. Read the rest of this entry »
A 94-year old male, thin and frail, has a history of lung injury from tuberculosis he contracted during 27 years in prison. He has been hospitalized four times since December, most recently in April when he got fluid from his lungs drained. He has been treated several times over the past few weeks for recurrent pneumonia and is now in the hospital again. He has been there for four days.
I think most of us would say we would not be surprised if his death was in the near future. But the patient is the much beloved Nelson Mandela, the former president of South Africa. Read the rest of this entry »
The Bible says "there is a time to be born and a time to die". This saying reminds everyone of our mortality and the debt. A discourse about dying and death in most human society including Nigeria is a taboo. Read the rest of this entry »
"Are you coming in?" the nurse asked.
"As soon as you finish," I replied.
She said the patient had just been extibated (breathing tube removed), and was already turning blue. The respiratory therapist was just finishing up, and I gowned, gloved, and masked to go in to see the isolated patient. Read the rest of this entry »
There is little question that the internet has changed our lives in North America and many other places in the world. I can hardly remember how I used to get accomplished some of the tasks that I do online before the days of the internet.
The internet has also influenced palliative care. People diagnosed with illnesses and their families seek out information and can obtain it in ways that were not always so readily available to everyone. The accuracy of the information is always a concern to care providers but the availability of reliable sources has increased along with the general understanding of how to assess that reliability. Read the rest of this entry »
When I encountered the word journey in hospice, I thought of a spiritual journey. As I discuss dying with patients and families, I realize that they are referring to the physical process of dying. Discussions include questions and comments like the following:
“Is she dying?”
“They told us that he was dying. We travelled home. He didn’t die.”
Families reference hospice brochures regarding physiologic changes that occur. Often, there were not discussions of the changes associated with medical interventions. Read the rest of this entry »
A story in a recent AARP magazine, “Against All Odds”, told of a woman who has survived longer than expected given her stage-4 cancer. However, the article was unfortunately typical in its use of military terms such as “battle”, “win”, and the overall message to “fight” cancer no matter what.
I’m always dismayed to see this. First, what pressure does this place on the person with terminal cancer who doesn’t want to “fight”? Are they weak for choosing not to, are they “giving up”? I see patients who are pressured “to do everything” even when seeking peace and comfort in their last weeks is the better choice for them. And, even worse, what does this type of thinking say to those who did “fight”, but lost? That they didn’t try or pray hard enough? That they’re losers? Patients and families can feel like failures when cancer doesn’t respond to treatment.
It’s interesting that we mostly use this language in regard to cancer. We don’t talk about “fighting” heart failure or dementia nor would we enlist “prayer warriors” to do so either. Perhaps it’s a legacy from the “War on Cancer”, which has had mixed success over the past 40 years.
So, the next time you find yourself reaching for military terms when discussing cancer, stop. Think about the implications on your audience. And maybe choose the kind of words you would for other serious illnesses instead.
“Would I be surprised if Mr. X died in the next 12 months?”
Packed with humanity this question is a powerful prognosticator according to the limited literature on the Surprise Question (heretofore aka SQ). And there is the rub. Prognostication issuch a poor science that we have come to rely on a combination of intuition, experience and ahem, surprise or lack there of! Don’t get me wrong-prognostication clearly helps with planning treatment, setting goals where time may be short, focusing on the care of the patient, not the disease. However when it boils down to a hunch, a sixth sense of an individual’s impending mortality I feel that, for the entire exponential tech wherewithal of the 21st century, we should be doing better. Or should we?
“A year is a long time for a sick person”. This is the astute observation of a lay co-worker when I tried to explain the concept of the SQ. His reactions were illuminating. “Obvious, commonsense, anybody can make this judgment,” were some thoughts he proffered. “Why not ask the nurses? They have more contact (with the patients) than doctors do. Why not split it into 3 month periods?” Rich stuff indeed! I tried to reason that the SQ does not ‘give’ someone a year to live; my conclusion is it functions as a clinician’s probabilistic guesstimation that an individual may pass any time within the next twelve months.
It got me thinking how the SQ could evolve:
What other rich information can be gleaned from clinician perspectives on how well or otherwise their patients are doing? What is the concordance/discordance between providers? How congruous is the clinician perspective with the patient’s?
Can we stratify surprise e.g. mild surprise (oh, really?), moderate surprise (no, you’re kidding!) and whopping (OMG I don’t ####ing believe it!! -drops cup) surprise?
What can we learn from the “false positives” i.e. those individuals who died whose death did surprise you and why?
What about those clinicians who are never surprised? At anything, because of burnout maybe or because they have an innate pessimism, cue “realism”, cue fatalism? Maybe they would be better off in a different vocation.
Are some clinicians better than others when it comes to the SQ? What variables in a clinician’s experience determine how accurate their SQs are? Duration, fellowship training, IM vs. FM, international grad vs. American, age, previous career? PCP vs. specialist vs. Palliative care provider?
What about asking the individual themselves? Would you be surprised if you died in the next 12 months? Why not? Would your family be surprised?
Spouse /other family members? Is it too emotive? Can it be done gently in the context of a larger conversation about the future? Could it help an individual and their families confront and perhaps acknowledge one’s mortality and, in effect, gain ground as a useful concept when prioritizing life left?
Ultimately though what bothers me most about prognostication is…. prognostication. It gives no perspective on how well someone is living or dying or existing in the luminal space between. Let us focus on this and the surprise will take care of itself.
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 »
“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 »
Not life. Not happiness. Not this. Not any one friendship.
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.
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…
It’s not uncommon to hear people say something like, “Well, he’s going to die the way he lived.” If he was a loner, perhaps he’d like to die alone. If she was a talker, perhaps she’d like to die with lots of people around talking. Sure, sometimes the way people have lived can be a helpful guide to how they might want to die. But ...... Read the rest of this entry »
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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