Physicians, nurses, chaplains, and families writing on KevinMD about comfort, dignity, and quality of life in serious illness: hospice and why it is used late, the prognosis conversation, goals of care, symptom management, and what it is like to care for a dying patient. Most contributors work in palliative medicine or hospice, or have been the family at the bedside. For a maintained record of what physicians have said about dying and the decisions at the end of life since 2004, including the assisted-dying debate with both sides at equal weight, see End of life: what physicians say, in their own words.
Studies show that when people know what palliative care is, they want it. Marketing genius Seth Godin talks about offering services that are “remarkable” — so good that a person would cross the street to tell a friend.
Palliative care has that kind of value, so why doesn’t our message travel upstream through word of mouth? Would-be evangelists are often flummoxed by the fact that the phrase has still has different …
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10 commandments to help with palliative care messaging
“Grandma fell and we’re in the emergency room. She’s very distressed and does not look good. I’m going to put the doctor on the phone.”
I could hear my mother’s voice strain on the other end of the phone line as I braced myself for my conversation with the emergency department physician.
The emergency physician told me that though the work-up was still developing, my grandmother was in respiratory distress, and that …
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The most loving thing: end of life and saying goodbye
I am certain that many of you might be familiar with the intelligent, vibrant young lady named Brittany Maynard. Brittany’s story was so compelling to the world that it reached the most outstanding and historic numbers through digital media. Ms. Maynard was only 29, diagnosed with terminal brain cancer and decided that she would end her own life “when the time seemed right.” Maynard was an advocate …
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Digital advances in the medical aid in dying movement
Brittany Maynard was diagnosed with grade 2 astrocytoma, a form of brain cancer on January 1, 2014, her cancer also returned in April 2014, where her diagnosis was elevated to grade 4 astrocytoma, also known as glioblastoma, with a prognosis of just six months to live. She decided to take lethal drugs prescribed by her physician to end her life on November 1, 2014, at her home in Portland, Oregon. Under Oregon’s “Death …
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The growing role of end-of-life activists
It’s Monday morning, and I’m the attending physician starting a week of inpatient service in the hospital. On my patient list is a man named Earl, age ninety-one. He’s outlived his siblings, his first and second wives and all of his peers. After seven decades of smoking, his lungs are failing; he carries a diagnosis that reads “severe emphysema.”
The sign-out note from Earl’s previous doctor reads: “Daughter and son-in-law met …
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Another chance to practice self-compassion
“For the rest of my life, I’ll never see her again or smell the scent of her unwashed hair. I’ll never hug her soft squishy hips or sigh when she tells me to stop sleeping, get up, and enjoy the day.”
This runs through my head before I start sobbing in my car. Most of the time I feel fine, but when I confront the finality of my grandmother’s existence, tremendous …
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How long life doesn’t mean dignity
“Before I leave, I want to talk to you about something very important. I want to make sure that nothing is ever done against your wishes, so it doesn’t matter if you’re 18 or 98 years of age, if you’re a patient being admitted to the hospital, I need to ask you some questions. You’re stable — so I hope I don’t alarm you with this discussion. Have you ever …
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Have difficult conversations now to avoid chaos later
On my first day of medical school, my father, a dentist, told me he’d just been diagnosed with stage four pancreatic cancer. Cancer had crept back into my life — except this time not into my body.
At age 12, I was diagnosed with brain cancer. After an aggressive surgery, I was tumor-free for 10 years. Then, at 23, I received the news of an inoperable recurrence.
While going through radiation and …
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There’s no textbook for when your father is dying
Because of my father
When you lose a parent during childhood, it effects just about everything you become. Decisions about life naturally stem from enduring this trauma. Some try to form families early and replace that which they feel has been lost. Others spurn close connections and create a wall so firm that no one else can encroach. An attempt to protect against pain. Because of my father I …
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The influence of a physician’s father
On a curiously warm morning last February, the minister arrived at my childhood home to guide my father to the other side. When he approached the bedside where all of us were gathered around with the Eagles Pandora radio humming in the background, my dad emerged from a semi-conscious state and sat up as best as he could. “Listen. I am not dying,” he declared. As an early-career researcher focused …
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The existential benefits of ginger ale
Many of us have moms and dads or older friends and relatives in nursing home facilities and care very much about their well-being and the supports they receive. But who’s caring for the care aides who do the bulk of the frontline work in nursing homes? Their welfare is almost entirely overlooked in the health system. And it turns out, the health of the care aide affects the Read more…
Who is caring for the care workers?
Let’s say your loved one is at the end of life. She’s 84, with advanced cancer that is no longer treatable.
A decision has been made to put her in hospice — which is a level of care more than an actual location. (Most hospice actually occurs at home.)
The patient waxes in and out of consciousness, sometimes lucid, but mostly not.
While no one is ready for her to die, this end-of-life …
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Rallying at the end of life
“I remember you,” said Gracie with the look of having found a long-lost friend. “You gave my husband the option to be treated aggressively in the hospital or return home with palliative care. He chose to go home.” I hesitated to ask, “How did he do?” Gracie went on to say that her husband had passed in the last month, yet lived nine months following our brief encounter in the …
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Be willing to fail your patients
During the 1990s Dr. Jack Kevorkian drove his Volkswagen van through an unmet need in American medicine euthanizing 130 patients who felt death was the only solution to their suffering. He euthanized his “patients” with devices he named the “Thanatron” and the “Mercitron.” The former allowed his patients to administer IV barbiturates and potassium while to latter delivered carbon monoxide. When convicted of manslaughter, he told the court, “Dying is …
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The physician-assisted suicide predicament
In his lifetime, William Shakespeare wrote almost 120,000 lines and about 900,000 words. His 37 plays and 154 sonnets burnished his reputation as the unrivaled wordsmith of the English language. So what would the Bard, who had something to say about everything, have said about palliative care of the suffering of the sick? Although I couldn’t resurrect him from his venerated grave, I could unearth quotes from his collective works …
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Shakespeare on palliative care
The tragic case of Alfie Evans has roiled Great Britain and the world. Alfie was a two-year-old child in the United Kingdom with an unknown degenerative brain disease who eventually deteriorated to the point that he required life support. His brain had become mostly liquid, and he could not see, speak, or hear. Alder Hey Hospital decided his condition was terminal and irreversible and wanted to stop …
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The dangerous precedent of Alfie Evans
As a retired physician who has written a book about end-of-life issues for elderly patients, I have placed myself in an awkward position. According to most guidelines, at age 67, I am elderly. How will I approach the end of my life?
Not only do my personal medical concerns career around in the echo chamber of my own mind, but I have the added challenge of trying to follow my own …
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An aging physician muses on end-of-life care
The recent passing of former first lady Barbara Bush, an American icon, also brought a commonly debated discussion to light, palliative, and end of life care. Many articles were published regarding her last days, mentioning she was “foregoing further medical care” or “no longer pursuing medical treatment.” These types of statements are not only inaccurate, they also minimize the incredible medical care provided by palliative care and hospice teams.
To realize …
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How Barbara Bush’s legacy can help us rediscover the benefits of palliative care and hospice
The “Great Man Theory” of history was popularized by the Scottish author Thomas Carlyle in the mid-19th century. In his 1840 “Lectures on Heroes,” he famously wrote: “The history of the world is the biography of great men.” Carlyle claimed that history was made by “great men” possessing personal courage, vision, charisma and political or military genius. Our more egalitarian age has favored mass movements, social forces and “great ideas” …
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Barbara Bush: The First Lady of palliative care
May lay in a hospital bed, her wrinkled skin covered with sensors that monitored her every breath and heartbeat. Her husband sat at her bedside gently stroking her withering gray hair as her chest moved slowly up and down accompanied by the soft whoosh-whoosh of the ventilator that breathed for her.
He stared expectantly at her face as if at any moment she would rise and free herself from the multiple …
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When someone is not dead but not alive
