Richard Smith: Is informed consent impossible at the end of life?

richard_smith_2014Informed consent is impossible at the end of life, said a British palliative care physician last week at a conference on Heybeliada, one of the Prince’s Islands in the Sea of Marmara, close to Istanbul. Could he be right?

Before I reflect on the question, I want to say a little about what was an extraordinary conference. Although the conference was in Turkey, most of those attending were Greek. The conference was held in what was once an Orthodox Greek monastery and still is a holy place for Greeks. The conference was on dying of cancer. Most of the speakers and audience were oncologists, but we heard from priests, theologians, artists, musicians, and philosophers. The conference rightly took a broad view of death and dying. We met in a dark wood panelled room with pictures of priests from floor to ceiling and an altar covered in icons in a corner behind the translators’ box. Priests in black robes with long white beards sat in the front row. Bringing together the ancient and the modern, the whole conference was live streamed on the web.

Sailing to and from Istanbul (Constantinople, Byzantium) I couldn’t but think of W B Yeats’s famous poem: we were, I reflected, “set upon a golden bough To sing to the lords and ladies of Byzantium Of what has passed, passing, and to come.”

The conference did, I think I discerned, have an aim: to improve dying for Greeks, probably by introducing palliative care and hospices. At the moment, Greece has neither, and looking after those dying of cancer falls to oncologists. Oncologists are thus, one oncologist told me, associated with death and so are avoided at dinner parties. Modern Greeks, it seems, take a different view from their famous forebearer, Socrates, who speculated that death might be “the greatest of all blessings for a man” and said as he killed himself “I to die, and you to live. Which is the better only God knows.” Modern Greeks are as enthusiastic as Americans about fending off death to the very last.

I learnt that Greece does now have a law allowing the creation of hospices, but no money to build them. The financial crisis ran like death itself through the conference.

One reason informed consent may be impossible at the end of life is that patients are just too sick, scared, or both to consider seriously the options. It still seems to be common for doctors to inform the family but not the patient about death being close, despite this being a direct contradiction of medical ethics. The role of the family and the patient at the end of life is especially complex, with the patient fading and the family possibly full of emotions, including denial, anger, guilt, and grief. Is the “informed decision” made by the patient or the family? When my father was dying, we took more decisions than he did, confident, although perhaps wrong, that we were doing what he wanted.

But is informed consent possible at any time? Often the options will be many, and the risks and benefits highly uncertain. Then there is the age old but unsolved problem of applying statistical data to the individual. If you tell me that I have a one in a thousand chance that a toxic treatment may extend my life, then why shouldn’t I be confident that I’m the one not the 999?

The palliative care physician believed that it’s the doctor’s duty to explain the options and make a recommendation. “That’s what we’re paid for.” Certainly to explain the options and say “over to you” seems heartless, especially at the end of life when informed consent is so hard. The art of medicine must be to tailor your messaging to the individual and to help people make hard decisions, but it can be a little too easy to lean towards what’s easiest for the doctor. “It’s always easier to treat than not treat,” said the physician.

I found myself partially convinced by the statement that “informed consent is impossible at the end of life,” but I still think that like excellence it is something to be pursued if never reached–but not to the point of cruelty.

Competing interest. RS had his expenses to attend and speak at the conference, and his wife was able to share his accommodation without paying.

Richard Smith was the editor of The BMJ until 2004. He is now chair of the board of trustees of icddr,b [formerly International Centre for Diarrhoeal Disease Research, Bangladesh], and chair of the board of Patients Know Best. He is also a trustee of C3 Collaborating for Health.

  • Michaelm

    Richard, you’re always both thoughtful and eloquent. Thanks.

    As it happens, a speaker at the AcademyHealth meeting last week mentioned a research project about using behavioral economics in the context of end-of-life treatment; that is, having the “default option” for consent become comfort care. Can you imagine an approach any more different than the one discussed by priests and oncologists on your Byzantine-era island? I’d be interested in your reaction. Here’s a link: http://www.healthpolicyohio.org/wp-content/uploads/2014/02/2013Conference_presentation3_halpern.pdf

  • PlanBeyond

    It is incredibly troubling to think that patients might be unable to give informed consent…and yet it’s so likely true as they become sicker and sicker from their disease or illness. It’s one reason why making end-of-life decisions part of the standard PCP visit would be so important. Preferences would be documented while patients are still of sound mind. If only people better understood living wills and what they’re all about (like this article below covers) doctors and families might have to deal with difficult end-of-life decision making just a little less often.

    http://planbeyond.com/blog/the-standard-pieces-of-a-living-will/