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Caregiver

Sticking Together

"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 »

Death and Dying in the Magic Kingdom

I just came back from teaching a palliative nursing course at the Disneyland Hotel in California. That might seem an odd juxtaposition but, from a self-care standpoint, it was great. First, the hotel is consistently, and occasionally relentlessly, cheerful with perky “cast members” greeting you brightly at all hours of the day. Guests walk around wearing Mickey Mouse ears, princess dresses and tiaras, and other aspects of various Disney characters. The weather was gloriously sunny, and warm. The course was the End-of-Life-Nursing- Education Consortium’s (ELNEC) Summit. This is the concurrent offering of its Core, Critical Care, and Pediatric Train-the-Trainer curricula. 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?”

 

 

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 »

Aversion to Planning for Serious Illness

We all know that a majority of Americans, 70-80% depending on the study, do not have advance directives or do Advance Care Planning (ACP). There’s a lot in the literature that shows people are reluctant to plan for an unknown or hypothetical future, or think about their own disability and eventual death. One hope I cherished was that the caregivers of those experiencing serious illness would be the group to take leadership in planning for their own futures. Read the rest of this entry »

The Care Plan After Death

On a number of occasions, I have sat bedside with an actively dying client that was more anxious about how their spouse, children, and or significant other will navigate the world without their presence. After taking time to explore the source of the anxiety, I realized that all of the attention to the client’s signs and symptoms were barely scratching the surface of the emotional pain associated with dying. Read the rest of this entry »

Can We Talk? Helping our loved ones express their end-of-life wishes

Crucial end-of-life conversations which should ideally occur in a non-crisis time in the comfort of our homes unfortunately happen during a time of medical crisis in the chaos of the hospital. When we are in crisis mode, we tend to “go with the medical flow”. As the current healthcare default is heavily slanted towards initiating medical technology without much deep thought about the benefits and burdens of such treatment, many patients are subjected to ineffective, burdensome treatments and interventions that may not be congruent with their goals of care. Read the rest of this entry »

A Randomized Clinical Trial on Family Hospice Caregivers (Guest Post by George Demiris, PhD)

We designed a randomized non-inferiority trial with two groups, Group 1 in which caregivers received Problem Solving Therapy face to face, and Group 2 via videophone. The study purpose was to compare the effectiveness of a PST intervention delivered face to face and via videophone to hospice primary caregivers. 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 »

Reclaiming Life On One’s Own Terms: Post Cancer Diagnosis and Treatment

Based on a group of 15 women who were recruited online from the Share website, we developed a theory which identifies the process of breast cancer survivorship as a process marked and shaped by time, as well as by perceptions of support which can be positive or negative. The diagnosis and treatment of breast cancer is described as the “Turning Point” or stimulus for change. Life is described as before and after breast cancer and is marked by weeks, months, and years following diagnosis and treatment. Over time, breast cancer is recognized as “a part of life” as women “learn to live with breast cancer,” and eventually “create a new life after breast cancer.” Read the rest of this entry »

Substitute Decision Makers and the decisions they have to make

I had a conversation with a friend who said “No way is hubby assigned that task: he’d want to keep me alive no matter what – even if my wishes clearly state DNR and no heroic measures. I’ve made, as my surrogate, a good friend who’s on my same wave-length.” Made me smile when my friend then tried to talk me out of one of my own decisions: not to have artificial feeding. “But,” Said she “ A PEG’s just a simple incision, not like a NG. You’d barely notice.” Read the rest of this entry »

Les Ailes des Anges

His hands, his strong hands, dancing with each answer. Those hands… Hands, flecked with age, but still younger than their 95. Each hand a fist without ever meaning to be. Hands that had handled saddle horns and lariats, even before I knew they might ever had. That had long made cattle know that hands, these hands anyway, not any cattle, let alone these cattle, were boss. Read the rest of this entry »

Preparation for End-of-Life Encounters: Guest Post by Virginia Seno, PhD., RN

Most people wish that they knew what to say and do, and how to be when approaching dying, death and grief. Because we’re uncomfortable and unprepared for end-of-life encounters, we either stay away, say and do things that don’t help; or act in ways that are neither becoming nor helpful to the people about whom we care. What if you did know what to say, what to do and how to be in end-of-life encounters? Read the rest of this entry »

Infinite-Caring Being : by JPM Guest Blogger Virginia Seno, PhD, RN

I’m reminded of the time when my late husband Josh died with a mere 17 days from diagnosis to death. Doctors, nurses, aides and others said and did many harmful things; and I had enormous work to do to get good care. I didn’t need that but that’s what I got. 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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