End-of-Life Choice, Palliative Care and Counseling

Posts Taggeddying

Should Doctors Learn to Grieve?

Why is it so difficult for doctors to confront the truth when a patient is dying, and almost impossible for most to talk about it openly with the patient and loved ones?

Last week I shared a hunch. A journalist asked me the question, “Why do doctors find these conversations so hard?” I said I could only speculate. But I would base my guess on decades of practice as a nurse and physician assistant, and watching doctors from the vantage points of those allied professions.

My guess was that doctors are among the people in our society most frightened by death. Their fear reinforces our society’s death taboo. They have not yet learned to live in harmony with mortality, and they don’t know how to grieve. Every dying patient presents another opportunity to deny the inherent role of loss and sadness in every human being’s life story. They act as though awareness of our transience does not define human consciousness, nor form the basis of our common shared humanity. In this way doctors are a bit “inhuman.”

The reporter said, “Wow, that’s really interesting.” Then the conversation ended.

This week comes news that science corroborates my hunch. The scientific study feels like synchronicity, coming so close on the heels of my flight of ideas.

Sunday’s New York Times carried Dr. Leeat Granek’s description of research into whether oncologists grieve when their patients die. She reports her central finding that, “Not only do doctors experience grief, but the professional taboo on the emotion also has negative consequences for the doctors themselves, as well as for the quality of care they provide. “

Dr. Granek’s study reveals that most oncologists suffer from unacknowledged grief, and they experience their sadness all mixed up with feelings of guilt, self-doubt, failure and powerlessness. They keep these feelings to themselves because that is the professional code. As an aside, I’ll mention here that professional approval of suppressed grief almost went to the extreme of labeling demonstrable grief a mental illness. But the panel of psychiatrists updating the DSM (Diagnostic and Statistical Manual of Mental Disorders – the bible of mental illness and its billing codes) bowed to public criticism and reverted to a two-month exception for bereavement in its definition of depression.

Granek’s work found that doctors’ unacknowledged grief comes out in impatience, irritability, emotional exhaustion and inattentiveness. Half the study participants admitted their thwarted grief affects the care of subsequent patients. It motivates them to continue aggressive, fruitless treatments long after palliative care would be more appropriate and to distance themselves from patients as death approaches.

We must draw the stunning and unavoidable conclusion that doctors’ averted grief constitutes an important cause of the deplorable end-of-life care that is America’s norm. Patients receive warrantless treatment through repeated hospitalizations and suffer the inevitable pain, bodily invasion, isolation and loneliness it brings. Perhaps instead of calling for more medical education, we should call for guidance in grief resolution and support for its expression.

When he was 82 my father suffered a fatal heart attack during a minor surgical procedure. After he died, my sister and I brought my mother to the hospital. I have always admired the doctor who came to us in the visitation room, crouched next to my mother’s chair, and wept. He gave my mother a great gift, and even through her creeping dementia, she never forgot it. He didn’t know my father well, but he was willing to feel and reveal his unity with the universal tragedy of losing one who is most dear. “You are not alone,” his tears said to her. “You and I and all human beings who love deeply must also someday bear the pain of loss.”

Grieving openly serves the important function of assuring ourselves and others that it is normal, and temporary, and part of a full and authentic life. Only suppressed grief threatens one’s mental health.
With training and practice, I believe doctors could learn to experience the sadness of a patient’s death, acknowledge it, decouple it from feelings of guilt or inadequacy, and move to the other side of grief. As poet Mary Oliver reminds us, though we must journey through black rivers of loss, the other side is salvation.

Doctors would do well to heed Oliver’s advice:

To live in this world
you must be able
to do three things:
to love what is mortal;
to hold it

against your bones knowing
your own life depends on it;
and, when the time comes to let it go,
to let it go.

A dog’s gentle death

Our family will always remember this holiday season as the time Sugar died. Sugar was a mixed breed, mostly lab/border-collie type. She exhibited the best character traits of every gene she carried and seemed to bear none of any breed’s drawbacks. She was a real credit to her species.

A member of my daughter’s household, Sugar was one of my “grand dogs,” for whom it was my privilege to dog-sit if her parents went somewhere she was not welcome. Those unwelcome places were few and far between because Sugar met love and enthusiasm everywhere she went. Friends would vie for the chance to keep her when her parents left town. But, I’m proud to say, my daughter believed I was her favorite sitter, so I always got first dibs on her company.

She lived a long time — almost 16 years — as her humans’ constant companion. Sugar was an enthusiastic participant in daily life, hikes, camping excursions and road trips. She accompanied my daughter to work at a neighborhood art gallery, hanging out on her bed and greeting patrons with gentle good will. She never forgot a face, and offered a smile and nudge of the nose to those she knew. She waited patiently outside restaurants and stores until her people reappeared, came to church and dozed in the corner during choir practice. Of course she attended social and family gatherings, and her birthday celebration was not to be missed as the highlight of the barbecue season.

During her long life Sugar taught us about living well. She taught us about playing and having fun. She taught us the importance of relationships and acknowledging our loved ones in small ways, each day. She taught loyalty and how to abide, steadfast during hard times. In the end, she taught about dying well, too.

Over the past few years deafness, poor vision and a variety of ailments slowed Sugar down and took their toll. Hip degeneration, leg weakness, recurrent bladder infections, a variety of benign tumors, stomach ailments — all these and more called forth the best in veterinary medicine. When her appetite diminished and she lost 15 percent of her body weight, we hoped the prescribed steroids would perk her up and renew her zest for life.

It was not to be. Sugar took to her bed, stopped eating and drinking, and withdrew from communal interaction. My daughter sent out word that Sugar was dying and the time had come, for those who wished, to stop by and say goodbye. Many, many did. For two days a steady stream of visitors came to Sugar’s bedside, told her how they loved her and shed a tear. Sugar acknowledged them with a weak tail wag, but continued her separation from this world.

One last time they brought her to the Oregon coast, her favorite place and what would be her burial ground. In the same cabin where she rested after so many joyful afternoons chasing balls and sticks in the surf, she spent a quiet night and drew her last breath.

As intentional and gracious as she was in living, so she was in dying. Instead of going off to a hiding place in the woods, Sugar let us witness, share and learn from the natural ending to a life complete. That’s how generous was her big, big heart.

CBS TV Program “The Mentalist” takes on dilemma of dying patients

On Friday March 31, the CBS television series “The Mentalist” ended the episode with a scene with a terminally-ill man choosing to end his life with medication. This scene demonstrates the rational desire people have to control their circumstances at the end of life.

It also shows the dilemmas faced by people who cannot openly speak with their physician about aid in dying.

Compassion & Choices offers information and counseling for people in all 50 states who are interested in achieving a peaceful death. We also offer a wealth of materials to aid individuals in letting their physician and loved ones know their end-of-life wishes.

Doctors and family members often push for futile, aggressive care

by Erin Marcus, MD
via KevinMD.com

Every once in a while, there’s a magazine piece that so encapsulates the key moral issues — and irrationality — of 21st Century medicine that it warrants designation as mandatory reading for anyone who interacts with patients. Atul Gawande has written some of these; so too has Slate medical columnist, Darshak Sangavi.

The latest entry on the required reading list is Katy Butler’s “My Father’s Broken Heart,” which appeared in The New York Times Magazine on June 20th. Butler, who teaches memoir writing in California, describes the seven-year deterioration of her father Jeffrey, a retired college professor. Jeffrey Butler was active and intellectually engaged well into his 70′s. At 79, he suffered a stroke that left him with significant problems speaking, walking and putting on his clothes. Despite his initial determination to overcome the stroke’s aftereffects, he deteriorated, telling his wife, “I don’t know who I am anymore.”

A year after the stroke, Jeffrey Butler developed a painful intestinal hernia that needed to be repaired. As is routine for complicated elderly patients, the surgeon requested a preoperative cardiology clearance. The cardiologist, in turn, refused to deem him stable for surgery unless he received a pacemaker for his slow heart rhythm (which Butler doesn’t describe in detail). This wasn’t the first time the specialist had advised him to get a pacemaker; a year earlier, just prior to the stroke, it had also been recommended, and Jeffrey Butler had refused. But this time, his wife and healthcare proxy, Valerie — who was overwhelmed, fatigued and, most likely, reluctant to impede an urgent procedure that would fix her husband’s pain, consented. The couple’s primary doctor, who knew them well and who had told them a year earlier that he considered a pacemaker “overtreatment,” found out about the decision after the fact, by fax.

The pacemaker insertion and subsequent hernia repair, were, in the short-term, seemingly successful. Otherwise, though, Jeffrey Butler continued to worsen, suffering additional strokes and becoming blind, incontinent, and senile, and developing the personality changes often seen with dementia. Katy Butler painstakingly describes the devastating effect of all this on her mother, who described her life as “in ruins.” Four years after the pacemaker placement, she asked his cardiologist to turn off the device, but he refused, describing it, according to Katy Butler, as something akin to murder. And so, the family’s hellacious existence continued, until Jeffrey Butler died uncomfortably of pneumonia in the hospice wing of a local hospital, eight years after his initial stroke. The cause of his expiration was respiratory failure; his pacemaker continued to work perfectly.

Valerie Butler died a year later, after resolutely refusing open-heart surgery for two leaky valves. At the beginning of the story, she was a vigorous woman who practiced yoga and calligraphy. By the end, she was mentally sharp but physically frail, and had lost her confidence in doctors as healers looking out for their patients’ best interests, instead viewing them, in the words of Katy Butler, as “skilled technicians with their own agendas.”

As a cog in the US medical machine, it’s not difficult for me to envision how all this happened. Taken individually, the initial decisions in Jeffrey Butler’s care don’t seem particularly unreasonable. While Butler doesn’t provide all the details, a painful intestinal hernia is something that needs surgical repair, and, if the bowel becomes trapped and deprived of oxygen, life-threatening. It’s totally understandable that the surgeon would want an elderly patient with known vascular disease to be cleared by a cardiologist before undergoing anesthesia, which can directly affect the heart and blood vessels. Implanting a permanent pacemaker is more debatable, but not totally out of line; even though Jeffrey Butler was significantly impaired after his first stroke, he was still, at that point, able to communicate, walk alone, and participate in water aerobics. It’s therefore not difficult to comprehend the rationale of the consulting cardiologist — who most likely wasn’t familiar with the family’s private pain — in recommending the device.

Unlike many people in this situation, the Butlers were lucky to have a thoughtful primary care doctor, with whom they shared a close personal bond. But as is true too often, the subspecialists left him out of the discussion. Even if they had included him, Katy Butler points out, he would have been “effectively penalized” financially for taking the time to have a lengthy discussion with her parents and coordinate a plan with the surgeon and heart specialist. (Butler also notes that the original health reform bill in the US House did include reasonable payment for such discussions, which were depicted as “death panels” by the bill’s opponents — thank you, Sarah Palin).

Butler points the finger for our fix-it-fast, think-about-the-big-picture-later medical system at the medical-device and specialty lobbies in Washington and the distorted payment system their efforts have spawned, in which doctors get rewarded to do procedures instead of taking the time to communicate effectively with their patients. Despite the reimbursement system’s role in creating this irrational monster, our country’s technology-happy mentality is also to blame. Intertwined with all this is the discomfort many of us have with the end of life, in which death is viewed as a failure. While medical schools have added curricula on this topic, it’s not exactly the focus of their overall educational program.

Doctors aren’t the only ones uncomfortable with death. It’s not uncommon for family members of critically ill patients to push for futile, aggressive care, even if the medical team feels the treatment is simply prolonging the patient’s demise. One friend of mine quit critical care medicine after being forced by family members to keep their relative with end-stage Alzheimer’s on a ventilator. “That’s not why I went into medicine,” she said.

Recently, I faced a situation similar to that of Jeffrey Butler’s doctors. My residents admitted a patient with dementia who briefly passed out and was found to have an intermittent heart block. As is common with many of our patients, he had no primary care physician. Of course, our team called the heart rhythm specialists right away, and they concluded that he was, indeed, a candidate for a pacemaker. But when they called the patient’s brother to get consent, he refused. At the time, I didn’t think much of it; we documented the refusal in the chart, adjusted the patient’s medications, and sent him back to his assisted living facility with a follow-up appointment. After reading Butler’s article, I can’t think of a better solution.

Erin Marcus is an internal medicine physician and writes at New America Media. This article originally appeared in The Huffington Post.

The *D* Word

In most published remembrances, loved ones dance around death — but does that really help anyone?
By Carlos Alcalá
The Sacramento Bee

Death is hard to find in death notices.

This is the time of year – January and February – when death rates are generally highest, according to the National Vital Statistics System.
The Bee and other newspapers tend to run more paid death notices at this time of year, too.

If you read those notices carefully, however, you’ll find many people in them didn’t exactly die.

Most of them “passed away.”

Some “entered into rest.” Others “left the world in God’s hands.”

In a few cases, there isn’t even a verb, only a date and location to indicate the death.

“Death is hard to deal with,” said University of California, Berkeley, linguist Geoffrey Nunberg, explaining why people avoid the four-letter word that starts with ‘d’ – died.

“This is one reality that’s hard to face head-on,” he said. “It happens in the Bible; it happened in Homer.”

Take Genesis: “Abraham gave up the ghost … and was gathered unto his people.”

It happens in the newspaper, too. A lot.

Bill Gaylord is a regular reader of The Bee’s “Remembrances.” That’s because of his age, which he described as “beyond four score.”

Gaylord joked, as George Burns once did, that he scans the notices and, if he isn’t in there, he shaves.

That’s how he noticed the variety of phrases.

“Over the years, I have realized that a fair number of people composing death notices for their loved ones avoid the simple statements of fact,” he said.

He started collecting phrases in The Bee’s paid death notices. They are submitted by survivors or funeral homes, as opposed to news obituaries, which are written by reporters.

In a few short months, Gaylord came up with more than 150 different ways to say a loved one died, fewer than 10 of which used the word “died.”

Among his more elaborate finds:

“At peace and sailing into the sunset.”

“Arrived on his last flight – as he called this final journey.”

“Left us to become an angel in heaven.”

“Slipped away quietly.”

And … “Went on to be with her well-known master, Jesus, where her husband of 57 years was waiting for her arrival. As he took her by the hand and led her up those golden stairs and through those pearly gates he might have said, ‘What took you so long?’ ”

The newspaper representatives who take the ads say they generally use “passed away.” The fancier phrases come from family members, not funeral homes.

When Alvin Joseph Broussard died from cancer in May, his family chose to say he “moved further north to live with his Heavenly father.”

“We believe he is alive and well, just different,” said his son, Joel Broussard.
By “north,” they meant heaven, he said.

Broussard’s family also said he was “fully restored.”

They believe, Joel Broussard said, that death restores the person to his perfect self, not the body that had been damaged by time or disease.

This is not an approach taught in the funeral services program at American River College, according to coordinator Jeffrey W. Stephenson.
“People really need to hear the words ‘dead’ and ‘death,’ ” he said, explaining that it’s a needed part of the mourning process.

Students in classes on the psychology of death and dying hear that, and it’s also conveyed in Funeral Directing 1, during which instructors discuss death notices, Stephenson said.

He prefers to use “died” when preparing an obituary but will change it at the family’s request.

Bea Toney Bailey also prefers a more direct approach to death, which she discusses on “Bea on Bereavement,” her local cable show sponsored by the Interfaith Service Bureau, at 9 p.m. Mondays on Comcast and SureWest.

“We’re a very young culture, and we’re very youth-oriented,” Bailey said.

Death makes us uncomfortable. “If we talk about death,” she said, “we might die.”

So people hedge.

“They say anything except, ‘Hey, they died.’ ”

Beyond death notices, people have developed a lot of slang for death – “kicked the bucket,” “popped their clogs,” “bit the dust.”

It isn’t just death, though. Other unpleasant and pleasant bodily functions – sex, aging, vomiting, defecation – also generate lots of euphemisms, Nunberg said.

Though she is a Christian, the daughter of a minister, Bailey doesn’t think those circumlocutions – roundabout ways of avoiding the point – are helpful to those who are grieving.

It means they are avoiding the reality, she said, but it also doesn’t help anyone to say, “Snap out of it! He’s gone!”

That only serves to alleviate the discomfort of the person who says it, not the mourner, Bailey said.

She also thinks people should prepare their obituaries ahead of time – as a favor to their families.

“Mine’s already done,” she said.

Although she says she favors the direct approach, what she’s written is not blunt.

It opens with no equivocation: “If you’re reading this document, it means I’m no longer with you.”

It continues, however, with one of those indirect phrases: “I’ve gone on to be with the Lord.”

Avoiding the ‘D’ word

People use many phrases to express death in death notices. Here are a few more examples collected by Bill Gaylord:
• Absent from the body – present with the Lord
• He was called home.

• As God swept His hand across the earth, He took his angel home.

• Fell asleep in the Lord
• Crossed over

• His spirit soars off to a new adventure.

• Joined his wife

• Left us suddenly

• Passed over to his reward

• Returned home

• Went to sleep peacefully

• Budded on earth, blossomed in heaven

• Taken away from us

Those looking for more information on death, dying and bereavement may want to look at Bea Bailey’s Web site, farewellmyfriend.net.

Elizabeth Kubler-Ross’ 1969 book “On Death and Dying” is still considered a classic in the field, and most bookstores will have a section of titles on mortality issues.