One of the hardest moments for a healthcare professional can be the realization that a patient under their care will not be cured. The circumstances of terminal disease mean at some point it may become appropriate to deliberately end aggressive treatments and continual rehospitalizations, and shift the focus of care to improving the quality of the patient’s remaining time. Too often, healthcare professionals see this as a failure on their part and are resistant to having a conversation with their patients about the inevitable fact that they are coming to the end of their lives. However, accepting this — and tailoring a care plan that helps ensure a patient’s remaining time is as serene and meaningful as possible — is often the greatest service a physician can provide.
When to Have the Conversation
Healthcare professionals should talk about hospice as soon as it becomes clear a patient will not recover from their disease. If they’re readmitted to the hospital regularly, with no improvement each time they leave, it is probably time to shift the focus of care from curative to comfort. Liz Warner is the Assistant Clinical Director at Crossroads Hospice in Cleveland. With 20 years of experience in the hospice industry, she has had her fair share of end-of-life conversations and has seen many physicians struggle to tell patients they won’t be getting better.
“If you’re not used to having this conversation with patients, it is difficult,” she says. “Healthcare professionals need to realize that some diagnoses are terminal and to keep treating these is not fair to the patient.”
As a first step, Warner recommends taking the time to get on the same page as the patient. Sit down and talk to them about what they understand about their condition. Although the details of their condition may have been explained to them by a physician, they may not have fully processed what this will mean for their continued treatment. With an understanding of the patient’s outlook, a healthcare professional can then help them reassess care priorities.
A Focus on Quality
Although the conversation about the end of a life is never easy, Warner notes healthcare professionals may be surprised by a patient’s sense of relief in having the discussion.
“I think physicians don’t generally expect it, but a great number of people are thankful that someone is talking about end-of-life options with them and helping them focus on quality — not quantity,” she says.
If a patient is resistant to the idea of hospice, Warner suggests asking them where their priorities lie. Do they want to spend their time in the hospital, going through uncomfortable treatments, away from their homes and families? Asking a patient what they want near the end of life may open the door to having the hospice conversation, she says.
“It’s not a matter of giving up,” says Warner. “It’s a matter of letting go of the things that are no longer appropriate. We’re not going to stop giving you medicine, we’re not going to stop treating your symptoms. What you’re letting go of are the things that aren’t helping you anymore, things that are uncomfortable, trips to places that you don’t have the energy to go to.”
Even if a healthcare professional is able to accept the fact that it is time to focus on the quality of a patient’s remaining time and put aside the efforts to increase its quantity, it can be difficult for a patient and their family to accept.
Although she’s positive about the majority of terminal patients and their willingness to shift the focus of their care, Warner notes there are some who will be resistant to that change. She urges healthcare professionals to allow patients to go at their own pace and to remind them that focusing on the quality of their lives is not about giving up hope.
“Hope is redefined for somebody with a terminal illness,” she says. “You’re not hoping for ten years’ worth of health. You’re hoping for a day.”
Once a healthcare professional helps their patient make this shift in perspective, things tend to get easier for them.
“Once a patient makes the decision to focus on their quality of life, they’re able to let go of the anxiety they had when they were on the threshold of making that decision,” she says. “It’s pretty remarkable to watch how hopeful these people still are. This shift in focus lets them focus on the other little positives that happen on a daily basis.”
To many healthcare professionals, the notion that it is best for the patient to stop aggressive treatment is a difficult one to accept. But once the shift from quantity to quality of life has been made, the changes for all involved can be profoundly positive and life affirming. “If you can look at these patients and what they’re going through, the decisions they make on a daily basis, you change how much you appreciate things in your own life,” says Warner. “Anybody who does this regularly should take huge fulfillment out of it and not worry about the small things they deal with. It is a remarkable skill and a reward to be able to help somebody make this kind of decision.”
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