TREATING THE TERMINAL

Is it ever acceptable for doctors and nurses to actively take part in a patient’s death? Many would say no, and perhaps cite the unambiguous commandment, “Thou shalt not kill.”

Not long ago, I read in the Boston Globe about parents who found themselves in the excruciating position of considering speeding the death of a child with terminal cancer and in merciless pain. And I was reminded of a child I met a few years ago. I’ll call her Ari, though that was not her name.

Ari was about four when I knew her. She didn’t say much. Mostly she turned her bald head away from me and tugged on her mom’s arm, the signal from a child in chaos that Mom had spent enough time with me.

Ari and her mother were camped on the hematology/oncology ward at Children’s Hospital in Boston when my wife and I were there with our daughter. They were back again some seven months later when I read on their Carepage blog about the choice Ari’s parents and doctors had made. Treatments had failed. Ari was terminal, in sedation-masked agony, and on a respirator. Her parents’ excruciating choice was to remove the respirator. They said goodbye. She died quickly.

Ari’s parents didn’t kill their daughter, and neither did the doctors. Cancer did that. The cancer untreatable, the doctors helped the parents and Ari accept the harsh truth of death, and compassionately treated her agony.

I’ve not been in that position myself, and find the decision-making process nearly impossible to imagine. But I’ve spent an unusual amount of time lately trying to imagine it. I’ve been thinking about it more than I ever expected or wanted to, as a member of the Community Ethics Committee, or CEC, of Boston. The CEC exists in the space between “Don’t just stand there, do something!” and “Don’t just do something, stand there.” Original members have been meeting monthly for three years, considering questions brought by doctors and nurses within the Harvard teaching hospitals. The idea was to go into the community in search of societal thought on issues of ethical intractability.

I missed the first study, when the committee struggled with the ethics of pediatric organ donation on cardiac death. I joined in year two, when the CEC was already in the first-draft stage of a report on CPR. I entered the conversation with an opinion I thought was a no-brainer: That CPR is automatic, and should be, when the heart stops. Turns out, the CEC isn’t a safe haven for no-brainers. What if dying is in process? Should a dying person’s last moments feature electric shock, broken bones and pointless violence, if it isn’t the patient’s condition that demands CPR, but family not yet ready for death to take place? Should a doctor be required to perform a brutal procedure for the family’s sake knowing it to be harmful to the patient?

Now the CEC is considering the ethics of palliative sedation, trying to shine a light on the line between assisted suicide and aggressively treating severe and intractable pain in a terminal patient when expedited death is a likely result. Cures common today didn’t exist not long ago; my daughter is the beneficiary of one of them. But each therapeutic advance brings new questions about the ethics of medical intervention in the process of life and death.

Ari had some of the same doctors and nurses as my daughter, but for us, the hard choices were about complications and possibilities, and never about imminent death. Ari’s disease was terminal, my daughter’s life-threatening. Hope resides in the distinction.

The work of the CEC is humbling. We’re parents and children, clergy and lawyers, educators and administrators, from an impressive ethnic, cultural and socio-economic cross-section of Boston.

The New York Times columnist Roger Cohen once wrote of his grand-jury service: “I was struck by how rare it is now in American life to be gathered, physically, with an array of other folk of different ages, backgrounds, skin colors, beliefs, faiths, tastes, education levels and political convictions and be obliged to work out your differences in order to get the job done.” He’d like the CEC. We’re essentially a group of people looking for clarity in a fog that doesn’t lift.

WHEN CPR DOES NO GOOD

In newly revised guidelines for administering cardiopulmonary resuscitation, the American Heart Association endeavors to simplify the steps in CPR. The AHA advises that hard and fast chest presses should come first, before mouth-to-mouth. What used to be ABC (airway, breathing, compressions) has become CAB.

The new guidelines advise that the rescuer push deeper into the chest -- at least two inches in adults. I suspect that’s a more significant push than many would be comfortable administering, and I can imagine a rescuer, whether trained or untrained, sensing having crossed a line between therapy and violence. Two-inch pushes at 100 per minute are going to leave bruising.

For me, this begins to address the seriousness of CPR as a medical procedure, and the distinction among types of CPR, which had seemed such a reasonable, heroic and nonviolent attempt to get anyone whose heart had stopped back to normal. Clearly I watched too much TV.

Two years ago, when I joined, the Community Ethics Committee was near completion of its report on non-therapeutic CPR -- that is, CPR performed in a hospital, by trained staff, on a patient who will derive no benefit from it, and is in fact very likely dying. The medical staff know this, and advise against CPR, but the patient’s family wants “something” done.

There is a reality to cardiac arrest -- it’s involved in 100 percent of deaths. And though CPR can be a lifesaver, it is not routinely effective. Meanwhile, the medical community is increasingly concerned about providing the intrusive and violent procedure at the point when patients are in the process of dying -- when CPR may only serve to prolong suffering, delay the inevitable, and destroy the possibility of a death with dignity.

That is definitely NOT the CPR mythologized so dramatically and heroically on TV hospital dramas.

GETTING THROUGH TO PATIENTS

The administrator at my church is diligent in devising and following through on new strategies for getting the message out about worship, events and other church-related matters. And yet invariably she’ll hear from a member upset about missing something important that was well publicized via email, newsletter and posters, who asks, “Why didn’t you let me know?” The saying that comes to mind: You can lead a horse to water, but you can’t make it drink.

For doctors and patients, the stakes are higher. But while doctors generally need to improve their communication skills with patients, especially when the subject is goals of care at end of life, even physicians gifted at communication have difficulty being heard. In a recent blog entry (Accepting Mortality), I loosely referenced studies showing what doctors are up against in getting patients to clearly understand their plight. It seems many patients come with built-in spin control that filters out bad news and clears shelf space only for the positive. I learned of this from a Boston Globe story by Elizabeth Cooney, dated September 20, 2010, quoting from separate studies by Baystate Medical Center and Massachusetts General Hospital.

In the Baystate study, heart patients believed stents would prevent heart attacks and death even though their cardiologists were clear in explaining that the best the stents could do was relieve chest pain by opening clogged arteries. The MGH study concluded that, in the Globe reporter’s words, “people considering serious decisions about knee replacements, prostate cancer tests, and long-term use of medications such as cholesterol-lowering statins did not hold a balanced picture of the consequences of their choices.” This study was based on a national survey.

Dr. Michael Barry, of the Foundation for Informed Medical Decision Making and senior author of the MGH study, said a patient who focuses on the positive “probably fits the American psyche about preferring action to inaction. ... Patients often have an exaggerated view of the benefits.’’

Informed consent is problematic, Cooney writes, because patients must make crucial judgments at the very time they’re overwhelmed by fear, pain, or confusion. This was certainly true for me, when my daughter was diagnosed in 2005 with severe aplastic anemia, and life-and-death decisions had to be made with no time to waste. She was cured by bone marrow transplant, and is healthy today. But five years later, there remain major inconsistencies and striking differences in the way my wife and I remember conversations with doctors and nurses. Left to me and my shock-diminished comprehension, consent would have been guesswork, and my daughter might not have enjoyed such a positive outcome. But with the support of my wife and other family, and through repeated and difficult conversations with doctors and nurses as well as our own research, our decisions ultimately were very well informed.

Cooney also writes that “doctors may not be the best communicators.” During my daughter’s illness, I experienced doctors of such understanding, patience and compassion who were enormously helpful, explaining things as often as my thick brain required. I also experienced one particular doctor whose medical intellect and comprehension of my daughter’s situation was extraordinary and invaluable, but whose edgy personal style scared the hell of out both my wife and I. Then again, maybe that doctor’s style was just right, in that I never left our conversations hearing only the positive. The negative was made very, very clear.

“After seeing a specialist,” Cooney writes, “patients may turn to a primary care doctor, if they are lucky enough to have one who knows them well. Some specialists favor decision aids that explain a treatment in standard terms, including risks and benefits. These could be videos on a DVD that the patients could watch at home and then, when they return for another visit, ask questions about what it means for them individually.”

She quotes Dave deBronkart, who blogs as ePatient Dave, and who has thought much about communication and other interactions between doctors and patients (www.epatientdave.com and www.patientdave.blogspot.com). His own insights stem from being diagnosed with stage 4 kidney cancer in January 2007. “My advice is, first of all, it’s increasingly wise for patients and families to take an active role in learning what they can about treatment options, and realize we’re all prone to wishful thinking,’’ deBronkart said. “It’s smart to have somebody else check your work.’’

Every patient needs an advocate of some sort. Going head to head with a medical specialist of high intellect can be daunting, and not all have the self-confidence or requisite skills to truly speak up in such a situation and force the issue until real understanding is achieved. And the patient ultimately controls both the pace and most effective means of real understanding, which can require being demanding and difficult. It’s also a comfort to think the doctor knows just what’s right, and will make all the important choices. If I didn’t have my wife and others looking out for my daughter’s best interests, I’d have been desperate for a clear-headed someone who had my daughter’s back. “Partner with your physician,” deBronkart says. “Ask lots of questions. Call back, and ask more.’’ Great advice.

Dr. Angelo Volandes of MGH is a strong proponent of visual aids in decisionmaking. “I think physicians are still in the mindset of the way physicians have been talking to patients since Hippocrates, using words and concepts that most patients have no clue about,’’ he told the Globe. “Our argument is that pictures do a better job at communicating information to patients.’’ According to Volandes, patients who only hear doctors describe options are significantly less likely to choose palliative care -- that is, comfort care at the end of life -- than patients educated by watching videos. Patients better understood choices they could see.

That certainly fits with what I’ve seen in the classroom at my daughter’s school, which is increasingly adept at appreciating and understanding the range of learning styles among different children. That same range of learning styles is true among patients, and so the more ways of communicating, and the more repetitions, the more likely understanding will be achieved. And the earlier that dialogue begins in the treatment process, the better.

-- Though Paul C. McLean is a member of the Community Ethics Committee, this blog entry does not necessarily express the views of the CEC or other members.

Racial Disparities in End-of-Life Care Need Further Investigation

RACIAL GAPS IN END-OF LIFE
CARE REPORTED

Boston Globe
October 4, 2010

Black patients with advanced cancer are less likely than white patients to have their wishes for end-of-life care honored, a new study in the Archives of Internal Medicine re¬ports, even though black and white patients were just as likely, to have discussed their preferences with their doctors.

Dr. Jennifer Mack of Dana-Farber Cancer Institute led a team that looked for a link between end-of-life discussions and what actually happened in the final week of cancer patients' lives. Previous research has shown that black patients are more likely than white patients to say they want treatments that extend life. White patients are more likely to choose palliative care, including hospice, which focuses on easing pain and discomfort rather than extending life.

Research has also found that black patients' preferences aren't necessarily followed. Mack and her colleagues wanted to know if the conversations patients had with their doctors might explain the disparity. They interviewed 71 black patients and 261 white patients whose cancer had spread and for whom chemo¬therapy had failed. About the same proportion — 35 percent of

black patients and 38 percent of white patients — said they had talked with their doctors about end-of-life care.

But there were differences when researchers asked patients about their illnesses. Fewer black patients than white patients with advanced cancer—32 percent vs. 47 percent — said their cancer was terminal, suggesting problems with communication be¬tween doctors and patients.

After the patients had died, researchers reviewed the care they received. They found that even if black patients had signed "do not resuscitate" orders, they were just as likely to get the life-prolonging treatment as black patients without DNR orders.

"These findings raise the concern that black patients receive inferior end-of-life care, a possibility underscored by disparities between black patients and white patients in certain objective care measures, such as pain management," the authors write.

"Although the reasons for our findings are not fully understood, white patients appear to have undefined advantages when it comes to receiving [end-of-life] care that reflects their values. Care of black patients at the [end of life] must be brought to the same standard.

Palliative Care is a great support for anyone

who is dealing with a serious illness at any stage, regardless of their prognosis. Its' purpose is to insure all patients and their loved ones have access to the best, most supportive care possible during a time of stress. See the link below for more information. You can also join their facebook page for more information. The link to it is on the URL listed below.

http://www.getpalliativecare.org/?NAV=&PAGE=1