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

For patients with cancer and their caregivers, high quality end-of-life care is incredibly important, as one expert explained.

“There has been a fair amount of research done that has shown that when patients do not receive what is considered quality end of life care ... not only are there poor patient outcomes — so patients usually tend to have more of a prolonged death, oftentimes they experience more pain, etc. — but it is also usually more traumatic for the caregivers,” said Sara Douglas, the Gertrude Perkins Oliva Professor in oncology nursing at Case Western Reserve University’s Frances Payne Bolton School of Nursing in Cleveland.

“There's a higher incidence of regret post-death among caregivers, higher incidence of depression and, in some cases, higher incidence of post-traumatic stress disorder, again, depending upon the circumstances,” Douglas told CURE. “And so, there's been a fair amount of research that has shown that poor-quality patient care at end of life has a negative impact not only on the patient, but obviously on the caregiver who survives and then lives with the decisions that were made at the end of life.”

After decades of research, questions regarding end-of-life care and its impact on patients and their caregivers remain for Douglas.

“The way we conceptualize and approach quality end-of-life care tends to be lacking,” Douglas said. “So, for example, we don't get information from patients themselves in terms of what it is they want at end of life. And it's as simple as (asking), ‘Do you want to live as long as possible, regardless of whether or not pain and other things are involved, or is comfort what's most important to you right now?’”

Through a $3.3 million grant from the National Cancer Institute at the National Institutes of Health, Douglas is set to study variables determining high-quality end-of-life care for patients and caregivers with a five-year study of 300 patients with stage 4 lung, pancreatic and gastrointestinal cancers and their caregivers.

“What I have done in this study — and part of the reason I think the National Cancer Institute was interested in it — is that I am reconceptualizing what it means to deliver quality end-of-life care,” Douglas said. “And what I'm saying is quality end of life care is care that benefits the patient, that we know from the patient themselves what it is they want at end-of-life and that's what they receive, number one. And it's also care that does not leave the caregiver wrestling with these untoward emotional issues post-death, such as complicated grief, regret, etc.”

Douglas and her team of researchers will study whether patients are receive care that is in line with their wishes, if the objectives of care for patients and caregivers are in alignment and whether the caregiver is experiencing guilt or suffering complicated grief following their loved one’s passing, according to a news release from Case.

Douglas told CURE that during her time in healthcare attitudes towards end-of-life care have not evolved much in the oncology community.

“We're not in every exam room, so we don't know what kinds of discussions are taking place, obviously, but we also know that that oncologists oftentimes are not entirely sure what patients want,” she said. “And caregivers aren't entirely sure, oftentimes, what patients want.

“And so I think that even in the area of cancer where, regardless of the diagnosis you receive it carries with it a heavy burden (and) oftentimes a feeling that your life has now been shortened regardless of your stage or type of cancer, that we still find reluctance for these discussions to take place until it's much closer to death and (not) at points where we might have been able to alleviate some of the suffering, or to do a better job of providing the kind of care that was aligned with what the patient's wishes were.”

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