The Hip Bone’s Connected To The Heart — Remedies To Mend Medicine
By Ellen FanningSeptember 24, 2012
We have plenty more rights than in the bad old days of Doctor Know-It-All. But doctors dealing with critically ill patients often find it hard to communicate both the bad news and the pros and cons of treatment options. A doctor who's been on both sides has some ideas to help.
You may imagine that the hardest part about being a medical doctor is the sheer goriness of it. Having to firmly drag a scalpel across naked skin in that first surgical incision. Draining an abscess. Giving a rectal exam.
But for many doctors, conversation — actual communication — is far more daunting.
What’s most difficult is when they have to deliver truly terrible news. They don’t want to tell you any more than you want to hear it.
To make themselves feel better about end-of-life conversations in particular, they’ll most likely inflate the patient’s life expectancy. Then the patient might add another dose of optimism where none exists, convincing themselves that the end is not nigh, after all.
The new book Critical Decisions, by one-time medical ethicist, physician and behavioural scientist Peter Ubel, lifts the lid on this “psychology of immortality”.
Now, you might also imagine that believing you have months to live rather than weeks may not matter much.
But what if, on the basis of their life expectancy, the patient signs up for painful, ultimately pointless treatment that reduces the quality of the life they have left? (And keep in mind such treatment is expensive. In the United States, close to 40 per cent of Medicare spending occurs in the last six months of patients’ lives.)
It wasn’t supposed to be like this.
Alongside the civil rights movement and the feminist revolution, the push since the mid-1970s for patients’ rights was supposed to empower people. Armed with good information and possessed of clear, rational thought, patients were supposed to be ready to choose medical care that promoted their best interests, or what they valued. One patient with early prostate cancer might be frantic to have the tumour removed. Another might prefer “watching waiting” rather than risk incontinence and impotence, given both are possible side effects of surgery.
But given the number of stories he’s heard, and the many studies revealing clumsy deathbed conversations, patients befuddled by medical jargon, and the unconscious psychological factors which screw up logical decision-making, Dr Ubel declares that the patients’ rights revolution has failed.
There’s no denying the doctor-patient relationship has changed in the past few decades.
As recently as 1975, it was still widely considered that doctors knew best when it came to deciding on a course of treatment for a patient. Everyone else’s opinion was immaterial — even when the patient was the wife of the President of the United States, at that time Gerald Ford.
Betty Ford, then 56, underwent radical surgery to remove her breast and the underlying muscles, without first being told the suspicious lump in her breast was likely cancerous. The surgeon would even have been at liberty to remove her ribs bones if he chose to do so, without consultation.
“Hush, hush,” a doctor said to Ford’s daughter when she enquired after her mother’s diagnosis.
Ubel recounts that President Ford consented to a so-called radical mastectomy for his wife while she was on the operating table, a biopsy having just confirmed the diagnosis.
In fact, the famous surgeon didn’t need his patient’s involvement; he was simply employing what he considered a “standard of care” decision-making approach. And he got to determine what that standard of care was, even though he knew that the National Cancer Institute was a couple of days away from announcing that a much less invasive operation was likely just as effective in preventing a recurrence of cancer.
A hundred years earlier, doctors had debated whether patients should even be given dire health news. Patients were supposed to be obedient. They needed to be reassured. For thousands of years, it seems, a doctor’s main aim has always been to inspire the confidence of the patient. And that may be how deception became a routine part of medical practice.
Ubel quotes the Hippocratic Oath (“I will prescribe regimens for the good of my patients according to my ability and judgment”), noting that the judgment was of course made by “the physicians … not the patients”.
And that might have been defensible before the advent of penicillin, when there was little a doctor could do to change the fate of a patient’s disease.
“Telling the truth in… dire circumstances was simply cruel,” Ubel writes of decisions not to break bad news to patients, because there were no options available to them. But the array of possible medical interventions and technologies available today means modern patients have choices to make.
At the same time that Betty Ford was slowly discovering what all her doctors knew, but were hiding from her, about her medical condition, the parents of another American woman were refusing to accept that doctors always know best.
Karen Ann Quinlan’s doctors steadfastly refused her parent’s request to remove the ventilator that was “breathing” for the comatose, brain-damaged young woman.
Her parents, Julia and Joe Quinlan, eventually won a landmark legal case against the resistance of those doctors who, in courtroom after courtroom, were determined to preserve the notion that decisions about the care of patients were best made by physicians.
This case, and others like it, heralded changes that would lead to a major shift in the doctor-patient relationship.
By the early 1980s, hospital lawyers had been busy drafting forms for patients to sign, ensuring doctors secured “informed consent” for medical procedures – a legal doctrine that had been slowly developing over the 20th century.
Medical ethicists were employed, ethics committees established, and doctors started going to conferences and being lectured about patient-oriented care. It must have been confusing for the medical profession. If patients didn’t want paternalism any more, what did they want?
“Knocked off this pedestal, doctors no longer know where to stand,” writes Ubel. “They’re trying to find a balance between giving too much information to patients and too little, between telling patients what to do and leaving them to their own devices.”
Part of the problem is that the person on the other end of the stethoscope can be exasperating. Medicos have discovered what it’s taken economists a couple of hundred years to realise — that the myth of the human as a rational actor, who needs only perfect information to make correct choices, is just that — a myth.
Ubel explains that patients — humans really — are driven by “some strong irrational impulses”. For example, research has discovered that if patients are shown a pie chart revealing that a particular treatment only has a 15 per cent risk of side effects they might baulk. But people are much more reassured by a pictogram showing the same statistic. Somehow the human brain can better comprehend the low risk of side effects when 85 squares are coloured green for no side effects and 15 are coloured red to indicate the rate of adverse effects.
One of the strengths of Ubel’s book is that while he has worked as a medical ethicist, a medical researcher and an academic, he also still sees patients.
When he writes, “The feel of risk almost always wins out over cold, hard statistics,” he knows this first hand.
He recalls many instances in which he has failed to convince a patient to make what he considers sensible, good choices. Patients fear minuscule side effects of vaccines, he writes. They obsess about the possibility they’ll suffer rare adverse drug reactions when, in fact, the risks of failing to take the medication are much higher.
Ubel describes the case of one patient who suffered ulcerative colitis, an inflammation of the colon which was so bad he had endured a decade of diarrhoea, intense cramps and interrupted sleep; he was constantly forced to rush to the bathroom at night, fearing he would soil himself, only to discover it was a false alarm. But however bad his symptoms got, the man would not even consider surgery to remove his colon, because he could not bear the thought of a temporary colostomy bag.
“Icky things, no matter how rare, are powerful motivators,” writes Ubel. “But, in general, people underestimate their [own] emotional resilience.”
Take the case of an American woman who refused the option of a feeding tube to help her endure cancer treatment, in part because she didn’t think she would need it.
“This was a bad decision,” the woman, Rebecca Dresser, later wrote in a remarkable letter to The New York Times. “As time passed, I became too weak to continue daily radiation sessions.”
Dresser, herself a professor of law and medical humanities, was eventually persuaded by a nurse to accept the feeding tube, “but it took a lot of persuasion”, and she writes that her doctors should have been more willing to have the argument.
“Some clinicians think that respect for autonomy means they should never disagree with a patient. Some think that it would be cruel to question what a seriously ill person says she wants. Some don’t want to devote time to the hard conversations that produce good decisions,” she wrote.
“In everyday life, arguments with family and friends help us think through the consequences of our choices and sometimes change our minds. Patients and doctors should do the same for one another.”
Ubel diagnoses that part of the inadequacy of doctor-patient communication is due to medical training itself. He says it desensitises medicos to suffering; it’s “part compassion fatigue, part inadequacy”. He adds that some clinicians may use the duty to inform their patients about treatment options as a “crutch with which we hobble away from those unpleasant feelings intruding on our medical deliberations”.
Add to this research that reveals many doctors just can’t help interrupting their patients. On average, according to one survey, doctors interrupt every 12 seconds when a patient is speaking.
Groundbreaking UK research, titled What Matters to Patients, revealed patients value things such as dignity, empathy and emotional support as much as they do the functional aspects of their care, such as finding out about the latest technologies, efficient processes, and positive outcomes. (It makes sense, then, when Ubel notes US research showing that it’s not the most incompetent doctors who get sued, but those who behave like the biggest jerks.)
“What came out very strongly were all the relational aspects [of patient care] — ‘Treat me as a person and not an NHS number’, ‘Discuss things with me rather than tell me’, ‘Make sure that I'm cared for as a whole’,” says Lynne Maher, who is charged with helping to realise the ideal of patient-centred care at the British bedside.
Formerly an intensive care nurse, Maher is now the director of innovation and design at the National Health Service’s Institute for Innovation and Improvement.
She remembers how she used to shoo the relatives of desperately ill patients out of intensive care units when visiting hours were over.
“My big lesson was learned from when my mother was in intensive care,” she says. “And I wanted to be there every minute of the day and I got really cross with the nurses. I realised then how important it was for family members to be [at the patient’s bedside] for what could be the last days of their loved one’s life. And they’re only allowed in two hours a day. It’s not good enough,” she says.
A practical reformer, Maher argues that time pressure may be as much to blame as any other factor for patients feeling alienated by a medical experience.
“So in our GP surgeries, we allow people six to eight minutes maximum [for a consultation]. In hospital consultations it may be a little bit more, but with everything else that goes on — emergencies and people calling — the clinical consultation can sometimes be a highly stressful time for the clinician let alone the patient. They are watching the clock. So having that 'values' conversation [finding out what a patient values in their treatment] while not making all the other patients wait, that creates a pressure. And I think that’s something in this notion of patient choice that we don’t think about: the practical realities of how we need to change the process to allow that to happen well.”
Time pressures, or perhaps just that emotional “inadequacy” described by Ubel, might account for the particularly insensitive treatment experienced by Jo Pigram, a 54-year-old woman from the Southern Highlands, south of Sydney, who was shocked to discover she had developed breast cancer in late 2010, despite being given the “all clear” in a mammogram earlier that year.
“When you’re told you have cancer, just the word freaks you out. It just blows you away. Nothing can prepare you for it I don't think,” says Pigram, who now co-ordinates a breast-cancer support group in her local area.
She recalls, however, the worst part of her experience was being told by her surgeon, almost in passing, that the cancer had spread beyond her breast tissue and she would require chemotherapy.
“I wasn't expecting it to be in my lymph nodes. I didn’t expect to be there. And when [the tests confirmed] that it was, I was just stunned, I guess. I was pretty emotional.”
But the surgeon, “good as he was”, she says, just delivered the news bluntly and handed her a referral to an oncologist.
“It was like he did it every day. I guess because he does it all the time, he didn’t realise [how upset she would be]. I found that very hard.”
In contrast, she describes the more recent, elective surgery to reconstruct both her breasts as almost as a liberating experience.
“I chose to have my other breast off. I felt empowered when I could make the choice,” she says.
Even with the education of doctors and patients about their rights and responsibilities and the increasing availability of “decision aids” – video or online resources that present material and statistics about treatment options – what hope is there for the future of the patients’ rights revolution, given the limitations of logic and emotion on all sides?
One of the final chapters of Ubel’s book, entitled “The Limits of Patient Empowerment”, would lead us to think the revolution is doomed. The chapter refers to a particular case study:
An intelligent, assertive woman with breast cancer wants to be involved in all her treatment decisions. It all goes wrong when she is on the operating table and the surgeon asks her husband to make a potentially life-changing decision for her, a decision the surgeon could easily have discussed with his patient before she was given the general anaesthetic.
“Can you imagine what it felt like to be put into this position?” writes Ubel. “I can, because that husband was me.”
In all, she was excluded from three critical decisions about her care.
“Astonishing. Truly astonishing,” writes her husband – who had been right there beside her throughout her medical ordeal. Having imagined that they possessed all the knowledge needed to influence doctor-patient outcomes, they’d still found themselves circumvented, stymied, powerless.
Ubel concludes that empowered patients are not enough. Clinicians are going to have to be more willing to collaborate. And beyond choosing more sympathetic candidates for medical schools, it's patients themselves who may have to force the change, becoming much pushier if they want to be part of directing better outcomes for themselves.
“Not in an angry way. Not in a power-grabby way,” he cautions.
He advises patients to, “Prepare yourself in advance. Think of strategies before you see your doctor.”
And then he adds, if it’s not going well, one should say, “‘You know, doctor, I’ve appreciated your time, but I feel like you’re still not hearing where I’m coming from. [Is there] anyone else you’d recommend?’
“And then see what happens!”