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End-of-Life Care Wishes Are Evolving Conversations for Patients, Caregivers

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One expert explains how patients’ wishes for their end-of-life care can change with time, making those conversations with caregivers “not a one-time, sit-down discussion.”

Conversations between patients with cancer and their caregivers about their wishes for end-of-life care are incredibly important, and not something to avoid, one expert told CURE®.

“A good time to start having these conversations is when you have a diagnosis that leads you to believe that your life may be shortened in some way, shape or form,” said Sara Douglas, a Gertrude Perkins Oliva professor in oncology nursing at Case Western Reserve University’s Frances Payne Bolton School of Nursing in Cleveland.

High-quality end-of-life care was broadly defined by Douglas as care that benefits the patient, is aligned with their wishes and also does not leave the patient’s caregiver with emotional harm.

Learn More: Poor End-of-Life Care Can Have Negative Impact on Patients and Caregivers

“It’s easy to talk about end of life when you’re not facing it,” Douglas said. “It’s like, I don’t have a diagnosis of cancer, so I can talk about my end-of-life wishes without it being emotionally charged in the same way it would be if I had a metastatic cancer diagnosis and I knew that my life was shortened as a result of that.

“So, my recommendation is it doesn’t have to be a super in-depth discussion — it can be a discussion to discuss it further – but basically, to put it on the table that this is something that we need to talk about over time because sometimes people feel one way at one point in their illness and then, as things progress, especially if there’s a lot of pain or suffering involved, people may feel differently about their end-of-life wishes at a different point in time. So, it's not a one-time, sit-down discussion. Oftentimes, it's something that evolves over time.”

Among the resources available for patients and their families is the advanced care planning program Five Wishes which allows patients to list their end-of-life care priorities.

“They could be things like ‘I don't want to be in a lot of pain’ or ‘I want to be surrounded by my loved ones’ or ‘I don't want to die in the hospital’ … and I think that those types of topics oftentimes are much more beneficial for family than some of the specific kinds of language that oftentimes comes up in the legal documents that we see with advanced care directives.”

Douglas spoke with CURE about topics of discussion for patients and caregivers reviewing end-of-life care wishes.

Transcription:

There are some really good resources for patients and their families. One is called Five Wishes, and that's basically a pamphlet where you fill out what are your five wishes (for end-of-life care) so they could be things like, ‘I don't want to be in a lot of pain,’ or ‘I want to be surrounded by my loved ones’ or ‘I don't want to die in the hospital.’ So, it can be things such as that.

And I think that those types of topics oftentimes are much more beneficial for family (members) than some of the specific kinds of language that oftentimes come up in the legal documents that we see with advanced care directives. So, it will be like, ‘Well, if I'm comatose, and this happens, I don't want an IV for this,’ it's very technical. But oftentimes, end-of-life doesn't follow those types of decisions.

And so, (patients and caregivers should be) having more global discussions about, generally speaking, ‘Do you want to die at home?’ (or) ‘Do you want us to do everything possible to mitigate pain?’ or ‘Do you want to live as long as possible, no matter what the circumstances?’ Sometimes, people will say, ‘I want to live long enough to see my daughter get married’ or you know there's some event or something that they're aiming for.

But having things like that, that aren't super-specific, like, ‘I don't want antibiotics, but I do want this,’ or real, specific things can help guide caregivers should they have to then be faced with some of these specific decisions, because they have a general framework of the patient(‘s wishes). And so, for some patients, for example, making sure that they receive (their) last rites, for example, might be something that's very important to them in terms of their religious faith. Or for some people, they'll identify that they don't want to be a financial burden on their family.

So, I'm talking about general feelings about, do you want to live as long as possible, no matter what? So, you're willing to be in a lot of pain, you're willing for this to be very burdensome? Or, is comfort what's really more important right now? Just that discussion alone can provide a lot of valuable information when it comes time to navigate some of these decisions.

Transcript has been edited for clarity and conciseness.

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