End-of-Life Choice, Palliative Care and Counseling

Posts Taggedpalliative care

Wisconsin Medical Society Wants Planning for End of Life

By Guy Bolton
Milwaukee Journal Sentinel
September 20, 2012

The Wisconsin Medical Society is launching a statewide initiative to make advance care planning – including the sensitive and often difficult conversations about end-of-life care – a standard part of patient care.

The initiative – Honoring Choices Wisconsin – is modeled after a communitywide initiative in La Crosse that has drawn national attention as well as a similar initiative by the Twin Cities Medical Society in Minnesota.

The goal is for the state’s health systems eventually to have people on staff trained to help patients understand and document the care they would want if they could not make decisions themselves.

“We know the tragedy of not having these conversations,” said Tim Bartholow, chief medical officer of the Wisconsin Medical Society. More

Poor Pain Control for Cancer Patients

By Pauline W. Chen, MD
The New York Times
September 20, 2012

Recounting her father’s struggle with cancer was difficult for the young woman, even several years after his death. He’d endured first surgery and then chemotherapy and radiation, she told me, and the cancer had gone into remission. He was thrilled, but the aggressive treatment left him with chronic, debilitating pain. Once active, he struggled to get around in his own home.

“It wasn’t the cancer that got him,” the daughter said. “It was the pain.”

Her father had turned to all of his doctors, with little relief. His surgeon had looked at his operative wounds, pronounced them well healed, then stated that they were in no way responsible for his disability. Both his cancer doctor and his radiation doctor congratulated him on being in remission but then declined to prescribe pain medications since they were no longer treating him and couldn’t provide ongoing follow-up and dosing guidance. His primary care doctor listened intently to his descriptions of his limitations, but then prescribed only small amounts of pain meds that offered fleeting relief at best.

“I’ll never forget what my father had to go through,” she said, weeping. “I wouldn’t wish this on anyone.”

I wish I could have reassured her that her father’s case was unusual. Sadly, according to a new study in The Journal of Clinical Oncology, a significant percentage of cancer patients continue to suffer from pain as her father did. More

Themes Identified for Improving End-of-Life Care in ER

Medical Xpress
September 5, 2012

Major and minor themes have been identified by emergency nurses who often provide end-of-life care in the emergency department setting, according to a study published in the September issue of the Journal of Emergency Nursing.

Renea L. Beckstrand, Ph.D., R.N., of the Brigham Young University College of Nursing in Provo, Utah, and colleagues surveyed 1,000 emergency nurses for suggestions regarding how to improve EOL care in the emergency department setting. Overall, 230 nurses provided 295 suggestions for improving care. The researchers identified five major themes and four minor themes. The major themes, which were mentioned by 20 or more respondents, included allowing emergency department nurses to have more time to care for dying patients; allowing family to be present during resuscitation; and providing more comfortable patient rooms, privacy, and family grief rooms.

Minor themes, mentioned by 16 or fewer nurses, included increased ancillary service involvement; pain management and minimizing suffering; family education; and honoring patients’ desires and wishes. “Large numbers of patients die in emergency departments in the United States every year. Caring for those who are dying in emergency departments is difficult because these highly technical departments were primarily created to save lives,” the authors write. “Implementing changes based on emergency nurse recommendations may dramatically improve EOL care for dying patients and their family members.”

At the End of Life, Talk Helps Bridge a Racial Divide

By Joseph Sacco, M. D.
The New Years Times
August 6, 2012

The family seated opposite me is tense. Having met at the bedside of a critically ill patient only moments earlier, we have gathered in a quiet alcove next to the intensive care unit to discuss what can only be bad news.

The patient — someone’s spouse, parent, child — is dying. As a palliative care specialist, I am to explain this with clarity and empathy and elicit an informed decision about what to do next.

This encounter has come after days, weeks or even months of terrible emotional and physical anguish, avalanches of bewildering, conflicting information and opinion, hopes raised and lost, and long vigils in the family waiting area. Now, it is the opinion of the I.C.U. staff that survival is no longer an option, and I share this opinion.

Living or dying is not at issue. The question this family confronts is how the patient will die: a little sooner, with adequate morphine, surrounded by loved ones in the hospice unit, or a little later, in a never dark or quiet patch of the I.C.U., ribs broken by failed, if well-intentioned, CPR.

Add to this the following: The patient and family are black. And while race should not be relevant at this moment, research tells us otherwise.

Blacks are much more likely than whites to elect aggressive care and to decline do-not-resuscitate orders. DNR election of even 30 percent is rare in any black community, and hospice enrollment is likewise low.

African-Americans have reasons to prefer aggressive medical management. A tradition of shared decision-making in extended black families and high rates of Christian religious affiliation appear to favor it. But more important, surely, is the lingering and pernicious effect of race-related disparity in health and health care.

Blacks suffer higher rates of chronic and preventable disease, disability and premature death than whites, and they struggle to access decent care. Misdiagnosis, underdiagnosis and substandard care are all too common. After years of inequitable treatment, who would agree to less care, to DNR or hospice when illness strikes or worsens?

Mistrust in the health care system, and the belief among blacks that doctors may withhold lifesaving treatments simply because of their race, has been demonstrated in several studies. I know of an elderly black man with advanced cancer who was asked by a doctor about CPR and hospice. “Do you ask all your patients these things?” he replied. Dick Gregory, the acerbic comedian, put it this way: “So now they are trying to get us comfortable with dying?”

Surely it is wise to bear in mind the effects of religion, family and the rest on medical decision making. But it’s wiser still not to let this become its own form of racism. Even if blacks generally prefer aggressive care, the patient seated across from me, I have found, is almost always willing to hear me out.

Dana Carr, a doctoral student at New York Medical College; Dr. Deborah Viola, an associate professor there; and I decided to look into this more objectively. We reviewed DNR orders in 1,113 seriously ill black patients seen over a six-year period by the palliative medicine consultation service at Bronx-Lebanon Hospital Center, a pioneer in providing palliative care to minority populations.

Seriously and terminally ill patients and their families were counseled on illness, treatment options and hospice care. The consequences of declining DNR and electing CPR when breathing and pulse stop — “coding,” in I.C.U. vernacular — were also made clear. For people with advanced heart, lung and liver disease, dementia or late-stage cancer, short-term survival is below 10 percent. Survival to hospital discharge — in coma, with broken ribs, coded repeatedly — approaches zero.

Our findings, published on July 9 in The American Journal of Hospice and Palliative Medicine, upend the conventional view of preferences for care among blacks. Sixty-five percent of black patients who were given palliative care consultation elected DNR, and 32 percent chose hospice — rates significantly higher than those previously demonstrated.

What made the difference? Providing patients and their families useful information in plain English, with compassion and clarity, enabling them to make choices in keeping with their desires and beliefs. Input from extended family, clergy members and parishioners was welcomed, and concern for disparity openly discussed. These exchanges, caring, honest and culturally aware, are the exception in modern American medicine. Provide them to all, I believe, and conventional wisdom will shift.

The suspicion evident in the tensed shoulders of the people I convene again and again in the alcove next to the I.C.U. fades remarkably quickly with just a modicum of empathy, truth and a rational, medically sound alternative to treatment that is often harsh and without benefit. And, should intensive care be chosen, those who provide it can be assured the decision is well informed.

Do this, and race — almost — becomes irrelevant.

Steve Lopez: After a ‘barbaric death,’ a call for change

By Steve Lopez
Los Angeles Times
August 6, 2012

My Sunday column on the “barbaric death” of a terminally ill man near Sacramento, and his wife’s plea for an Oregon-like Death With Dignity law in California, brought responses from those wanting to know how to join such a cause.

As I’ve reported before, there is no current campaign for such a change. The best place to get involved in the greater movement, though, and to check on legal developments around the country that could one day have an impact in California, is to visit www.compassionandchoices.org. The no-profit advocates for more end-of-life options and alternatives to often-futile, budget-busting medical procedures that can end up doing little more than prolonging the dying process.

Some readers made pitches for palliative and hospice care as good ways of managing terminal illness and pain and suffering, and as I’ve written before, those can indeed be better and less-expensive alternatives in some cases than extended hospitalization.

When you’re in hospice or palliative care, though, that doesn’t mean round-the-clock care. It means you’ll have short visits from medical professionals every day, or maybe every other day. A family member often becomes the primary caregiver and ends up, as Sandy Wester described in my Sunday column about her husband Donnie, being witness to an excruciating death.

Sure, medication is available to minimize pain. But there’s a different kind of suffering that’s common for terminally ill patients, as I learned earlier this year with the prolonged death of my father. Sometimes he was in pain, but the greater suffering was from his growing limitations, his loss of privacy, and the agonizing realization that he had no control over the pace of his demise.

I said then, and I’ll say again now, that if and when I’m in a similar situation, I’d want to have among other options the legal right to determine my own fate, end my misery, and relieve loved ones of the physically and emotionally exhausting burden of caring for me as I wither away.

In Oregon and Washington, those who register for physician-assisted aid in dying don’t always use it, in the end. And most people don’t register at all.

I’d be relieved, though, to know that I had such an option.

And you?