Provider Refusal of Futile Care.

Thaddeus Pope has an intriguing post at his blog today about what can be termed the undermining of doctors' refusal of care. He cites a recent article by Christopher M. O'Connor, associate legal council for Lancaster General Hospital (where I was born), in the recent Journal of Lancaster General Hospital. The article is titled, "Can the Health Care System Ever Say No?" and addresses the lack of clear guidelines and protections for physicians who wish to end care that is not beneficial.

I have written passionately about the problems of provider refusals (so called conscience clauses) that often allow a provider -- a doctor, a denominational institution, pharmacists, etc. -- to deny services that they are morally, ethically, and most often religiously, opposed to. Twenty percent of Americans are treated in Catholic hospitals, for instance, where they are denied medical services that the Catholic Church opposes. These guidelines discriminate against women predominantly regarding reproductive services, but also against gays and the elderly. I strongly oppose this type of discrimination and see it as a violation of patients' rights.

But Connor comes at it from another angle. What about doctors who are, by emotional family members or fearful terminal patients, asked to provide care that will not prolong life? Doesn't the provider refusal law protect them from perpetuating the suffering of patients?

Jessica Mitford wrote in her 1963 bestselling expose of the funeral industry, "The American Way of Dying," that most of us are coerced into buying services and products for our deceased loved ones because we are uneducated consumers, distraught with the emotions that surround death, pressured by cultural forces that dictate a contrived form of propriety, and forced to be consumers of an industry that we know very little about.

The health care industry is not unlike the funeral industry in that we know little about it as consumers until we are forced to make use of it, often under great distress. As death and illness have become more and more institutionalized, taking place primarily outside the home, our culture has become less and less versed in how death occurs, how the medical industry operates, what choices we have in cases of terminal illness. And too, medical technology has created more choices and options, making that removed industry even harder to understand easily. We are uninformed consumers, in other words, lost, when forced to enter into the health care system, in the complications of it all. And the emotion of it all. The responsibility of making decisions is a terrible weight for the ill and their family members. Doctors are looked to as paternal, autoritarian advisors, the ones who know everything and can make the best decisions for us.

This can be detrimental in the case of a young woman who has been raped and happens to enter a Catholic hospital where state laws don't require that the emergency room workers where she is treated inform her of the existence of emergency contraception. Lives are ruined in these instances. But the other side that Connor reminds me of this morning, is when a doctor has to say to an unknowing and distraught loved one that a Do Not Resuscitate order is the very best for their loved one, a path that will cause the least amount of suffering.

In a culture where denial of death is championed, where suffering is glorified, where patients are faulted for "giving up" if they go into hospice, where fighting against death and illness is termed as a battle that requires great strength against all odds, how can we educate emotional family members and patients about how to die? And how do we equip well-intentioned doctors to not only communicate impending death but to make legal decisions about ending futile care? I don't have concrete answers. And obviously neither does the medical industry. Certainly the answers aren't to be found in the cultural stories that we are bombarded with daily by all sorts of media.

I have a hospice patient right now who is having a difficult time understanding that he is terminal. His family members and friends keep sending him cards that say "get well soon." The facility's church group come to pray for a cure for him and tell him that no miracle is too impossible for God. We had a very difficult time finding an effective pain management regiment because he was ashamed to tell the nurses when he was in pain, intimidated by their authority, and unsure of what was happening to him. He failed to understand that there is life between full function and death and that the period of disability he is entering has value -- because like the rest of us he just didn't know. He doesn't know what's coming and he has no reference to the experience in his prior 65 years. He looks to the nurses and doctors for direction; they look to him for decisions -- neither fully able to discuss the matter frankly.

Patients will only be able to make informed medical decisions when they are informed consumers. Unfortunately, so many factors impede proper informed consent. Yet I fear that strengthening provider refusals improperly limits patients' rights, taking the most important decisions out of the hands of those lives directly affected. There's nothing like informed, patient, incremental conversation to prepare a patient for what is ahead. Until doctors and society are willing and able to have those conversations, we will struggle to keep decision-making in the right hands: the patient's.

The post:

His conclusion: "Recent legal decisions have not necessarily prohibited the health care system from refusing to provide care, but they have questioned, and perhaps narrowed, the circumstances in which the medical community can refuse to provide care it believes is both ethically and medically inappropriate."

In a section titled "unsettled legal foundation," O'Connor writes: "Courts have recognized that physicians cannot be forced to provide care that is not beneficial. However, they have failed to announce concrete standards or consistent principles to guide the medical community to resolve disputes between it and patients (and their families)."

O'Connor, actually goes beyond making the point that the law is unsettled ans suggests that it is getting even less provider friendly. Citing the March 2009 Betancourt opinion, he writes that "Although courts, and in some cases, state legislatures, have shown a willingness to recognize circumstances in which the health care system can refuse to continue care that is not beneficial, recent events indicate that the tide may be turning."

The Legacy of Jack Kevorkian.

Lewis M. Cohen at HuffPo on the legacy of Jack Kevorkian:

While there's little doubt that he has been a galvanizing figure on both sides of the right to die movement, when it comes to his actual role in alleviating suffering, the reality is far murkier. Kevorkian's legacy has long threatened the ongoing and truly compassionate efforts of hospice and palliative medicine, a medical specialty that focuses on symptom and pain management for the terminally ill. Over the past decade, widespread acceptance of palliative care has contributed to a dramatic change in how people die. Even in America's intensive care units -- our country's most medically aggressive settings -- more than three-quarters of an estimated 400,000 deaths are now preceded by treatment limitation decisions. In 2008, 1.45 million Americans died while making use of hospice services, and according to Dr. Steven Miles, a Professor of Medicine at the Center for Bioethics at the University of Minnesota, fully eighty-five percent -- or approximately two million -- of the 2.4 million deaths occurring annually in the United States medical system are preceded by a structured decision to limit life-sustaining treatment. Throughout the nation it is now both legal and ethical for people to refuse to initiate or to discontinue life-support treatments.

Far from being their leader, palliative care practitioners consider Kevorkian to be a dangerous distraction. Yet despite this disavowal, palliative care is sometimes maligned -- primarily by a coalition of sanctity of life and anti-euthanasia organizations -- because of the legacy of Dr. Death. In the early 1990s, Kevorkian came to the public's attention after retiring from his profession as a pathologist -- a doctor who provided no clinical care, but instead performed autopsies on the dead -- to become a physician-assisted suicide activist. However, in a notorious broadcast of the CBS program, 60 Minutes, Kevorkian showed the world that he had shifted from physician-assisted suicide to active, voluntary euthanasia -- injecting a patient suffering from Lou Gehrig's disease with a fatal combination of three medicines -- a crime for which he received an eleven to twenty year sentence for second-degree murder.