Andalusia takes new step to ease path for terminal patients

Region adds advanced care planning bill to dignified death legislation from three years ago

Andalusia has just taken dignified death a step further. Three years ago, the southern region was the first to enact legislation on the issue (Aragon and Navarre soon followed suit). Now, its government has announced the creation of a document called Advanced Care Planning that will function like a living will, where doctors will record each patient’s personal healthcare preferences for the final moments of their lives.

There are already around 150,000 registered living wills in Spain, of which 24,290 are in Andalusia, where the register is consulted an average of three times a day. But doctors are finding themselves treating terminal patients who did not express their preferences ahead of time, or if they did, used a standard model that only reflects very vague preferences; often, this standard form was filled out and signed when disease was just a faraway possibility, making the text too imprecise.

“We believe we need to go a step further, and ensure that all patients who wish to can receive all the necessary information regarding their disease, so we can treat them according to their preferences,” said the Andalusian health commissioner, María Jesús Montero of the Socialist Party. “For instance, we could have a heart patient who is about to undergo complex surgery. What we want to do is anticipate what might happen in this specific case, to know whether this person would want to be kept on life support, and if it came down to it, whether he or she would rather pass away at the hospital or at home.”

Advanced care planning was developed in the United States in the mid-1990s; these days, it is a well-consolidated health management tool in the US, Australia, New Zealand and Britain. The Andalusian department of health has published its own guidelines for health professionals, who are expected to start using the document in the coming weeks.

“Always voluntary”

In any case, the project will “always be voluntary” for patients, the commissioner added. Doctors will now offer the option to their patients, who are free to accept or reject it.

Ideally, advanced health planning should be offered to anyone, but special care will be taken to discuss the option with patients of 75 years and older, those at high risk of heart disease or stroke, and those with neurodegenerative, respiratory, oncological or cardiovascular diseases that suggest a likely need for terminal care. The document will reflect general preferences (degree of acceptable deterioration of awareness, desired place of death and pain management) besides more specific ones like refusal to undergo surgeries or organ donation.

Advanced planning can even include such details as who should be there with the patient when death comes, how to dispose of the body, or things to take into account during funeral preparations.

The guidelines even go so far as to recommend that doctors help terminal patients express in writing feelings and emotions aimed at their loved ones. “Expressions like I’m sorry, I forgive you, thank you, I love you, forgive me for and goodbye are sometimes difficult for some people to utter, yet very necessary or very helpful,” reads the document.

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