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Every time we get health care, ethical issues are embedded.
To explore this under-discussed issue, in today's The Eminents interview, I spoke with Dr. Mildred Solomon, president of The Hastings Center, a bioethics research institute in Garrison, NY, who is also a professor at Harvard Medical School, where she directs the school’s Fellowship in Medical Ethics.
Marty Nemko: If a person has a serious disease, for example, late-stage cancer, should the physician—under all circumstances--disclose the prognosis and probable outcomes of treatment? After all, some people would rather live in ignorance than with the constant fear that their next pain is a sign of impending death.
Mildred Solomon: Most people want to know the truth of their situation but good physicians ask patients how much information they want and whether they would prefer that someone else, such as a family member or close friend, be the main receiver of that information and even decider of treatments.
I should add that many physicians wait too long to disclose a dire prognosis. Many patients could save unnecessary suffering if they fully understood the situation. For example, they may not realize that choosing a third round of chemo may only shrink a tumor and extend survival time little if at all. Or they might not understand that participating in a clinical trial in life’s final weeks might mean less time with loved ones. Of course, many chemotherapeutic agents do offer great benefit.
So if you or a loved one is very ill, consider letting your doctor know you want the truth, the whole truth, no matter how scary. That should free your physician to speak more freely about all your options.
MN: Many physicians don’t discuss the cost of treatments. Is that ethical?
MS: When the patient and family are paying, doctors should talk with patients about cost-saving options. Medical costs are the U.S.'s number one cause of bankruptcy even for people with insurance because of deductibles, co-pays and medicines. As I mentioned, there are some very expensive but only marginally beneficial drugs and interventions for which much less expensive alternatives may exist.
Physicians have been taught through the ages to “do no harm.” We should count financial harms among those that medicine can inflict, so I think physicians have a duty to warn about them.
MN: Should doctors discuss cost with patients who have no skin in the game: when the insurance company or taxpayer are paying all or nearly all the cost, as with Medicaid?
MS: I’m not a fan of invoking guilt in patients, especially among sick ones, who are vulnerable. Those decisions shouldn't be made ad hoc at the bedside. Rather, we need national and health-system guidelines to set resource allocation priorities and to rein in costs.
MN: I note you used the word "guidelines" rather than "rules."
MS: Right, and guidelines shouldn't be used to create cookbook medicine. Physicians must retain their discretion to apply guidelines based on the patient in front of them, not on statistical averages.
MN: You think physicians should discuss costs with patients who have to pay out-of-pocket so they won’t go bankrupt. Yet you don’t want doctors to discuss costs with low- and no-pay patients that might bankrupt the nation?
MS: We should create a culture of stewardship among the public but not by asking the patient to consider the cost of treatments to the system during the clinical encounter. I believe that would place too much burden on the patient at the wrong time and place, and would backfire by making patients distrustful of their physician’s recommendations, especially any that the doctor might make about further treatment's ineffectiveness. Patients might think such a recommendation was made to save money, not because the treatment was ill-advised.
MN: But just as we’re urged to give money to charity and to take mass transit to reduce society’s carbon footprint even though it’s personally inexpedient, shouldn’t all patients be encouraged to think globally and act locally regarding health care? If so, especially because the U.S. is in such great debt with health care a major cost, shouldn’t we ask patients to consider whether it’s fair, for example, to insist on a cost-ineffective treatment, even something small like an MRI in a case in which the physician believes the much cheaper X-ray will be almost as accurate at a small fraction of the cost?
MS: Yes if done the right way. National guidelines are important because they back up physicians as they recommend the highest-value options for their patients.
Also, there are approaches beyond guidelines that involve the consumer but not when they're a patient. For example, Value-Based Insurance Design offers consumers lower co-pays for choosing treatments with stronger evidence of effectiveness, and higher co-pays if choosing lower-value services.
MN: Are there any other important ethical dilemmas regarding the doctor-patient relationship?
MS: Many! How much time do you have?
MN: What do you think of this argument about access: Everyone has a right to a basic level of care but people who pay into the system should be entitled to a higher level, for example, greater choice of physicians and hospitals, or a treatment that is only marginally more effective and costs more.
MS: If patients want more than is covered by the standard package and they can afford it, they should have the right to buy it. The trick is in determining what’s in the standard package and so far, our society has resisted having that kind of broad public conversation.
I do believe that whatever the standard package is, it should not be based on ability to pay, and that the healthy should subsidize the sick through pooled insurance out of altruism and because it makes sense: None of us know when we will need the help, so it’s important to have one another’s back. That describes the kind of nation I would like to live in.
MN: There’s growing acceptance of palliative care and hospice. Are there serious ethical issues associated with those?
MS: One issue is that more physicians should start referring their patients to palliative care services very early, upon diagnosis of a serious, advanced illness. Palliative care is not just for people with a terminal condition. It’s not hospice. It’s for anyone with a progressive, chronic or serious illness who wants superb management of pain and symptoms and careful treatment planning. More physicians should start referring patients to palliative care services, which would facilitate a team approach to the patient’s care.
Hospice is a totally different program, specifically for those with a six-month terminal prognosis. The good news is that more and more Americans are making use of this benefit and dying within hospice. The bad news is that so many patients receiving palliative or hospice care get it just days before dying, thereby losing out on many of those programs’ benefits.
MN: California recently joined Oregon, Washington, and Vermont in passing right-to-die legislation. Montana achieved legalization through its courts and New Mexico is in a similar process. Is there an ideal national model?
MS: Most advocates of legalization agree with the Oregon model, on which the California, Washington and Vermont laws are based. I might mention that Oregon studies the law's implementation and issues an annual report. It has consistently shown that most people who opted for physician aid-in-dying were already in hospice. That’s good news to people who have been concerned that it would be used on more vulnerable populations or on less appropriate individuals.
One other point: Vermont’s law sunsets the monitoring process after a few years. I think that’s unfortunate. States that legalize the practice should, as Oregon does, commit to continuously studying it to avoid untoward effects.
MN: It has been argued that once you hit a certain age, say 80, the health care system should pay only for palliative care. Some, like philosopher Michael Scriven, say we even have a duty to die to save costs from and improve access to the already overburdened health care system, in which, ever more, there simply won’t be enough physicians, hospitals, etc to go around. What do you think?
MS: I completely disagree. I don’t think the wealthiest nation in human history needs to set age limits on treatment, let alone encourage elders to kill themselves to save the system money.
We do need to reduce health care costs but that’s not the way to do it. Instead, we should invest in technology assessment and cost-effectiveness studies, and transparently discuss what we should prioritize so we can wisely decide what the system should pay for. Currently, the U.S. Congress forbids the Center for Medicare and Medicaid Services to take cost-effectiveness data into consideration when making reimbursement decisions. Let’s start by changing that before we start telling the elderly there are treatments they can’t have. Let's also ensure that health care providers have more frank conversations with patients about which treatments are most likely to make their lives better and which may simply prolong suffering without commensurate benefit.
MN: Is there anything else you’d like to add?
MS: Improving end-of-life care, ensuring that patients understand their options, and designing health care that meets people needs affordably are major questions that should not just be settled by experts. We need robust public discussion. Thanks to you for sharing these issues with your readers.
Marty Nemko's bio is in Wikipedia. His new book, his 8th, is The Best of Marty Nemko.
