Ethics, Ambiguity & "The Emperor"

Ethical decision-making is a balancing act. Sounds simple enough. But finding that balance is about as simple as getting the toxic cocktail right for a round of chemotherapy: Strong enough to do what’s needed, but not too toxic. Benefit and harm in every drop.

There was much to absorb in the first night of “Cancer: The Emperor of All Maladies,” even having read and reread Siddhartha Mukherjee’s remarkable “biography of cancer” that inspired the three-part PBS documentary.

The opening episode did many things right, but nothing captured for me the unyielding ambiguity of cancer care more than one parent’s description of the quest to cure childhood leukemia: “Unspeakably depressing and indescribably hopeful.”

Among the more than 15,000 sending tweets during the opening episode (#CancerFilm, @theNCI), one said she lasted 10 minutes before tuning out. She hopes to make it to 15 tonight, but no promises. Such is the ambiguity simply in choosing to watch while a family becomes a husband, a wife and their despair.

Even as I anticipate the second of three episodes, I’m still struggling with the tension between Sidney Farber’s firm and angrily defended stance against harming vulnerable children and research practices that clearly harmed sick children but in the process transformed childhood leukemia from merciless and fatal to merciless but survivable.

“I will not injure two children to save one,” the chemotherapy pioneer once said in a heated encounter with another pediatric oncologist.

Farber said this in the mid-1960s, when at the National Cancer Institute, Emil Freireich and Emil Frei were increasing survival of pediatric leukemia by experimenting with four toxic chemicals in combination. That was too many for Farber, who was as dedicated as anyone to treating and curing leukemia but saw harm as tipping the balance.

And yet, into the 1960s, no child survived leukemia. Today, nine out of 10 survive it, largely due to the evolving chemo cocktail.

The half-century that produced that astounding fact also led to the elevated place of informed consent in medicine and science. On Monday night, we watched parents absorb some promising news and then have to decide whether to follow the medical team’s advice and give their child over to a randomized trial. “The thought of your child’s treatment being up to a computer is hard to take.” Indeed.

Reality TV gets no more real than “Emperor of All Maladies.” I’ll be watching again tonight. Hopefully for the full two hours. But, as an oncologist might say, no promises.

Cross-posted at paulcmclean.com.

Also see Matthew Herper’s excellent piece for Forbes. 

Palliative Care's Highly Placed Supporter (Pope Francis)

In CEC studies of decision making in medical care at the end of a person’s life, two themes have emerged as most important: 

1. The communication skills of the care team, especially the attending physician (in particular, an ability to listen as well as explain).

2. Not waiting till the last minute to involve specialists in palliative care. (The CEC appreciates the care more than the name; we prefer to think of it as compassionate care.)

As CEC chair Carol Powers wrote in a November 2013 letter to the Massachusetts Department of Public Health: “The Committee has three primary concerns about the provision of information on palliative care and end-of-life treatment options. That information must be sensitive to cultural and religious perspectives; it must be in a form that assumes face-to-face conversations with a member of the patient’s health care team; and it must be provided in the context of continued and compassionate care.”

I thought of Carol’s letter, and her testimony to the DPH’s Public Health Council, while reading a new statement of support for palliative care from a powerful voice: Pope Francis. In a letter of strong endorsement to the Pontifical Academy of Life, the pope defined palliative care as “an expression of the properly human attitude of taking care of one another, especially of those who suffer.”

The full text as translated by Vatican Radio follows. A report concerning the letter can be heard here.

Dear brothers and sisters,

I cordially welcome you on the occasion of your general Assembly, called to reflect on the theme “Assisting the elderly and palliative care,” and I thank the President for his kind words. I am especially happy to greet Cardinal Sgreccia, who is a pioneer... Thank you! Palliative care is an expression of the properly human attitude of taking care of one another, especially of those who suffer. It bears witness that the human person is always precious, even if marked by age and sickness. The human person, in fact, in whatever circumstance, is a good in and of himself and for others, and is loved by God. For this reason, when life becomes very fragile and the end of earthly existence approaches, we feel the responsibility to assist and accompany the person in the best way.

The biblical commandment that requires us to honour our parents, understood broadly, reminds us of the honour we must show to all elderly people. God associates a double promise with this commandment: “that you may have a long life” (Ex 20:12) and, the other, “that you might prosper” (Dt 5:16). Faithfulness to the fourth commandment assures us not only of the gifts of the earth, but especially of the possibility of enjoying them. In fact, the wisdom that makes us recognize the value of the elderly person and that brings us to honour them, is the same wisdom that allows us to appreciate the numerous gifts that we receive every day from the providential hand of the Father, and to be happy. The precept reveals to us fundamental pedagogical relationship between parents and children, between the elderly and the young, with regard to the preservation and transmission of the teachings of religion and wisdom to future generations. To honour this teaching and those who pass it on is the source of life and blessing.

 On the contrary, the Bible reserves a severe warning for those who neglect or mistreat their parents (cf. Ex 21:17; Lv 20:9). The same judgement applies today when parents, having become older and less useful, are marginalized to the point of abandonment. And there are so many examples!

The Word of God is always living, and we see well how the commandment proves topical for contemporary society, where the logic of utility takes precedence over that of solidarity and gratitude, even within families. Let us hear, then, with docile hearts, the word of God that comes to us from the commandments – which, let us always remember, are not bonds that imprison us, but are words of life.

“To honour” today might well be translated as the duty to have extreme respect and to take care of those who, because of their physical or social condition, could be left to die, or “made to die.” All medicine has a special role within society as a witness of the honour that is due to elderly persons, and to every human being. Neither the medical evidence and efficiency, nor the rules of health care systems and economic profit, can be the only criteria governing the actions of doctors. A State cannot think of making a profit with medicine. On the contrary, there is no more important duty for a society than safeguarding the human person.

Your work in these days explores new areas for the application of palliative care. At first, they were a precious accompaniment for cancer patients, but now there are many different illnesses, often related to old age and characterized by a chronic and progressive deterioration, that can make use of this kind of assistance. The elderly, first of all, need the care of family members – whose affection cannot be replaced by more efficient structures or more competent and charitable healthcare workers. When this is not sufficient, or in the case of advanced or terminal illness, the elderly can be benefitted by truly human assistance, and receive adequate responses to their needs thanks to palliative care offered in such a way that it supplements and supports the care provided by family members. Palliative care has to objective of alleviating suffering in the last stages of illness and at the same time of assuring the patient of adequate human accompaniment (cf. Evang. Vitae, 65). It deals with the important support for the elderly, who, for reasons of age, often receive less attention from curative medicine, and are often abandoned. Abandonment is the most serious “illness” of the elderly, and also the greatest injustice they can suffer: those who helped us to grow must not be abandoned when they need our help, our love, and our tenderness.

I therefore welcome your scientific and culture efforts to ensure that palliative care can reach all those who need it. I encourage professionals and students to specialize in this type of assistance, which has no less value on account of the fact that it “does not save lives.” Palliative care recognizes something equally important: recognizing the value of the person. I urge all those who, under whatever title, are involved in the field of palliative care, to practice this duty of conserving the spirit of service in its fulness and recalling that all medical knowledge is truly science, in its most noble sense, only if it finds its place as a help in view of the good of man, a good that is never achieved by going “against” his life and dignity. 

It is this capacity for service to the life and dignity of the sick, even when they are old, that is the measure of the true progress of medicine, and of all society. I repeat the appeal of Saint John Paul II: “Respect, protect, love and serve life, every human life! Only in this direction will you find justice, development, true freedom, peace and happiness!” (ibid., 5).
It is my hope that you will continue your studies and your research, that the work of the promotion and defence of life might be ever more efficacious and fruitful. May the Virgin Mother, the Mother of life, assist you and may my Benediction accompany you. Please, do not forget to pray for me. Thank you!