How to Die in Oregon (2011)

Peter Richardson's documentary opens with an Oregon man swallowing a lethal dose under the state's Death with Dignity Act, surrounded by his family. Footage like that is almost never shown. From there the film follows several threads across roughly a year.

Spoilers throughout. Discussing this film means discussing how it ends.

The central thread is Cody Curtis, a 54-year-old faculty member at Oregon Health and Science University who has liver cancer. Earlier surgery bought her time, and that time is running out. She obtains a prescription, keeps it in the house, and repeatedly does not take it.

Around her are people running into the law's practical limits, a widow campaigning for a similar act in Washington State, and volunteers who sit with those who choose it. One sequence shows a patient whose insurer will not fund chemotherapy while noting that assisted death is covered; it caused a great deal of argument. Richardson does not editorialise. Curtis eventually takes the medication at home, and the camera stays.

Most films on this site have to reconstruct illness. This one photographs it, and the difference is obvious in about ten minutes.

Advanced abdominal cancer is shown doing what it actually does. Fluid swelling the abdomen. Jaundice — the yellowing of skin and eyes that follows when the liver or bile ducts stop clearing waste. Weight loss. Fatigue that sleep does not touch. A person's world shrinking to a few rooms, then one.

The film is also accurate about the law. It shows the repeated requests, the waiting, and the rule that the person must swallow the medication unaided. It shows that many people obtain a prescription and never use it. And it is clear that hospice and palliative care run alongside this rather than instead of it, which is the single most misunderstood point in the whole debate.

Most valuable of all, it captures the texture nobody writes into scripts. Dying is largely logistics, family negotiation and boredom, punctuated by fear.

The main distortion is selection. These are articulate, insured, largely white Oregonians with supportive families and a health system that works for them. People without those advantages are barely represented. Critics have argued, reasonably, that this makes the law look more benign than the broader evidence supports.

Editing compresses months of decline into a few sequences, so deterioration reads faster and cleaner than it was. Opposing arguments appear but get little room. And the film says almost nothing about the disease itself: how it was found, and whether anything could have found it sooner.

Both cancers in this territory share a problem. The liver keeps working while substantially diseased, and the organ itself has few pain nerves. Pain tends to arrive only when a tumor stretches the capsule around the liver or presses on something else. So tumors are often large before anything is felt.

NCI's list for bile duct cancer shows how unremarkable the early signs look:

• Jaundice.
• Dark urine.
• Clay-coloured stool.
• Pain in the abdomen.
• Fever.
• Itchy skin.
• Nausea and vomiting.
• Weight loss for no known reason.

Any one of these has commoner, harmless explanations. Together, or persisting, they are a reason to be seen quickly rather than watched at home. Itching without a rash is worth singling out, because people rarely connect it to the liver at all.

Here the film's silence is worth filling, because this is where public understanding usually goes wrong.

NCI states that there is no standard or routine screening test for liver cancer. Ultrasound, CT and the alpha-fetoprotein blood test are being used and studied for it, and NCI notes that alpha-fetoprotein is sometimes used together with liver ultrasound to try to detect liver cancer early in people at high risk — chiefly those with cirrhosis, which is scarring of the liver, or chronic hepatitis B.

That is surveillance of a known high-risk group, arranged with a specialist. It is not a public screening programme, and it is not settled science: NCI's summary for clinicians concludes, on fair evidence, that screening people at elevated risk has not been shown to reduce deaths from liver cancer. Specialists still offer it, and there are good arguments for it, but nobody should be told it is proven.

For bile duct cancer the position is simpler. NCI says plainly that there are no routine screening tests before signs and symptoms occur.

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For most people there is nothing to be screened for. The message is different, and narrower.

If you have cirrhosis or chronic hepatitis B, ask your specialist whether ultrasound and alpha-fetoprotein checks are right for you, how often, and what the evidence behind that offer actually is. If you do not, then jaundice, unexplained itching, upper abdominal pain or weight loss you did not intend should be investigated quickly, not monitored at home.

And the film's real subject — what you would want at the end, and who knows it — is worth discussing long before anyone is ill. How to Die in Oregon cannot tell you what to watch for, but screening and possible warning signs can.

This page discusses How to Die in Oregon for education. It is not medical advice, and nothing here is a judgement of anyone's real medical care. Spotted an error? Please email corrections@cancerexplained.org.