End-of-Life Choice, Palliative Care and Counseling

Right to Know

Patients Have Trouble Giving True Informed Consent

by Harriet A. Hall, MD
KevinMD
January 1, 2013

Most of us would agree that doctors should not treat patients without their consent, except in special cases like emergency care for an unconscious patient. It’s not enough for doctors to ask “Is it OK with you if I do this?” They should get informed consent from patients who understand the facts, the odds of success, and the risk/benefit ratio of treatments. The ethical principle of autonomy requires that they accept or reject treatment based on a true understanding of their situation and on their personal philosophy. Numerous studies have suggested that patients are giving consent based on misconceptions. There is a failure of communication: doctors are not doing a good job of providing accurate information and/or patients are failing to process that information. I suspect it is a combination of both.

An article in the New England Journal of Medicine reports that while the great majority of patients with advanced lung cancer and colorectal cancer agree to chemotherapy, most of them have unreasonable expectations about its benefits. For some cancers, chemotherapy can be curative, but for metastatic lung or colorectal cancer it can’t. For these patients, chemotherapy is only used to prolong life by a modest amount or to provide palliation of symptoms. Patients were asked questions like “After talking with your doctors about chemotherapy, how likely did you think it was that chemotherapy would…help you live longer, cure your cancer, or help you with problems you were having because of your cancer?” A whopping 69% of lung cancer patients and 81% of colorectal cancer patients believed it was likely to cure their cancer, and most of these thought it was very likely. More

Doctors Are Practicing Irrational Medicine at the End of Life

By Monica Williams-Murphy, MD
KevinMD.com
September 22, 2012

I just took care of a precious little lady, Ms. King (not her real name), who reminded me that, too often, we doctors are practicing irrational medicine at the end of life. We are like cows walking mindlessly in the same paths; only because we have always done things the same way, never questioning ourselves. What I mean is that we are often too focused on using our routine pills and procedures used to address abnormal lab values or abnormal organ function, to rightly perceive what might be best for the whole person, or even what may no longer be needed. Our typical practice habits may in fact become inappropriate medical practice at life’s end.

Ms. King was a case in point: She was a 92-year-old nursing home patient on hospice for metastatic breast cancer. Ms King had been transferred to the ER for a sudden drop in blood sugar, presumably due to her oral diabetes medication. Her appetite had apparently been trailing off, as is common at the end of life, and her medication appeared to have become “too strong.” Her glucose level had been corrected by EMS during her trip from the nursing home to the Hospital, so when I came into see Ms King she was at her ‘baseline.’

I opened the door to bed 24 and a grinning little white-haired lady peered at me from over her sheet. “Hi,” she said greeting me first.

“Hi, Ms King,” I smiled back at her and picked up her hand.

She reached over with her free hand to pat me on my forearm, “You sure are a cute little doctor,” she said smiling.

I couldn’t hold back a little laughter. “Well, you sure are a cute patient too,” I smiled and winked at her.

She winked back at me.

“Wow, this is the most pleasant 90-year-old I have cared for in a while,” I thought to myself.

As we chatted it became clear to me that she had some mild dementia but had no pain or complaints at the time. She just said, “I think I had a ‘spell’” ( a “southernism” for some type of unusual and undefined episode of feeling ill or fainting); and “I’m not hungry” when I offered her food.

Leaving her room still smiling after our pleasant exchange, I went back to look at her medical record from the nursing home and two things immediately struck me:

1. She was on 20 medications, only about half of which seemed needed or appropriate to me. For instance, if someone is expected to die from cancer in the next 6 months (which is why she was on hospice care), why should that person take a cholesterol pill every day?

  • Is it going to change her outcome? No.
  • Will it add to her comfort? No.
  • Could it possibly cause unnecessary harm? Yes.
  • So, why is she on this medication? No rational reason that I can think of, other than mere habit on the part of the doctor.
    • Doctor habit: See an abnormal lab value ( i.e. elevated cholesterol) = give a pill to correct it. While this is a fine default among the rest of the population, this type of unconscious medical practice at the end of life is contributing to wasteful drain of precious and scarce Medicare and Medicaid dollars. We cows (doctors), need to depart from these types of paths. If the usual pill, practice or procedure does not have any benefit for the dying person, if the typical treatment doesn’t create comfort, or may actually harm this person, then DON’T DO IT! Get off this path!

2. She was on hospice care but her order sheet read, “Full Code.” I can never figure this one out. If you or your family member enters hospice care this means that you generally accept that your time on this earth is limited, specifically to less than 6 months or so. Thus, it is irrational to ask for chest compressions or shocks or artificial life support measures when your expected end comes. Right? Didn’t you sign up for hospice because you were wishing for a peaceful, natural death? Well, not everyone agrees with me, so I called Ms. King’s power of attorney to clarify this point, it was her son, Mr. King.

Mr King was a pleasant man who said that he was unable to come to the hospital because he himself had suffered a stroke. After I explained the full code vs Do Not Resuscitate/Allow Natural Death pathway, he said, “Oh No! she never wanted all of that life support stuff. Both of us want what you said, ‘ a natural death.’” More

Going Gently Into That Good Night

By Daniel Krieger
Narratively
September 18, 2012

If you’re dying and don’t care to wait around for death, you can always book your own appointment. One simple way to do this would be to stop eating and drinking; another would be to stop life-sustaining medicine or devices. Assuming you can decide on your own, both of these methods are good and kosher as far as the law goes. A third approach, however, ventures into a grayer area of legal and ethical terrain—quaffing a lethal cocktail. In the business of ending your life, the means matter a lot more than the final result.

These were three things my mother, Ann Krieger, was pondering when she reached the final leg of her terminal illness last year, a month before Mother’s Day. After several years of fighting colon cancer, her doctor broke the news that the cancer had spread and the treatment was no longer working. There was no more they could do.

“You’ve got months, not weeks,” he said.

“What should I do?” she asked. “Should I end it now?”

“No,” he said. “You don’t want to do that.”

Actually, my mother kind of did, but the doctor referred her to hospice and gave her information about palliative care, a mode of treatment that relieves the pain of patients with serious illnesses. But in my mother’s case, the physical distress was less acute than the existential. Coming to terms with the fact that you’re going to die is elusive. For some people, like her, an attempt to manage the logistics could make it seem more doable. She and my father had given this some thought and had very specific ideas about how they wanted their end-of-life matters handled.

Six years earlier, horrified by what was taking place with Terri Schiavo in Florida, they sat my sister and me down to give us instructions. Should it ever come down to it, my parents told us, they wanted no artificial resuscitation, experimental procedures, machines or IVs—none of that stuff. They just wanted us to make sure they would be allowed to die naturally. “The idea,” my father explained to me recently, “is to be pain-free, comfortable and not go through a lot of unnecessary, costly and painful treatments which won’t help anyway.”

My mother had first-hand experience with this 21 years ago when her mom, my grandma Trixie, who was in perfect health at 85, was struck by a hit-and-run driver near her home in Queens. The doctors at New York Hospital said she had severe trauma in her brainstem and wouldn’t wake up. She was hooked up to a ventilator. More

Steve Lopez: End of life case in New Mexico may affect California

By Steve Lopez
Los Angeles Times
August 14, 2012

There’s no way to predict when or if California will offer what’s known in Oregon and Washington as Death with Dignity, or physician-assisted aid in dying, but I’ll keep you posted on a case in New Mexico that could have implications here.

In the New Mexico case, said Kathryn Tucker, legal affairs director for a nonprofit advocacy group called Compassion & Choices, “We hope to clarify … that a vague statute that makes a crime of ‘assisting suicide’ does not reach the conduct of a physician providing aid in dying, because of course the choice of a dying patient for a peaceful death is not, and ought not be conflated with, ‘suicide.’”

Tucker said the case in question involves a woman with advanced uterine cancer who has said she would like to have, as one option, the right to avoid prolonged suffering by obtaining doctor-prescribed medication she could ingest to bring about a peaceful death if she finds her dying process unbearable.

ucker said California’s statute on assisting a suicide is similarly vague, and if the New Mexico court rules in favor of allowing aid in dying, “it could have persuasive influence in California.”

To learn more about the legal and medical issues on this topic, go to www.compassionandchoices.org and check my video chat above with Tucker and Dr. Judy Neall Epstein, director of the End-of-Life Consultation Program at Compassion & Choices.

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.