11.21.17 Planning Ahead, Always

End-of-life Care Important in Neurodegenerative Diseases But Can Be Lacking, Study Finds


Patients with neurodegenerative diseases have views that are framed by the context of their lives, and end-of-life care should be equally personalized, respectful and given in a timely way, researchers in a study report.

The study, “The views of adults with neurodegenerative diseases on end-of-life care: a metasynthesis,” was published in the journal Aging & Mental Health.

With patients living longer, end-of-life care (EOLC) is becoming a significant healthcare priority. Palliative care is a major part of EOLC, helping to improve quality of life for patients and their families by addressing a patient’s psychological, spiritual, and physical needs as health declines.

Research has shown that palliative care can be of benefit to people to chronic diseases. But such care is generally reserved for cancer patients, and less often recommended for those with neurodegenerative diseases like amyotrophic lateral sclerosis (ALS).

For this reason, researchers at Lancaster University set out to evaluate views expressed by people with neurodegenerative diseases regarding palliative and EOLC.

Using four different electronic databases, they selected 13 articles, then evaluated the studies and interpreted the findings. Views covered included patients with Huntington’s disease, motor neuron disease, multiple sclerosis, dementia, and Parkinson’s disease.

Results showed four areas or themes in EOLC of importance.

First, patients significantly valued autonomy and control. They wanted an active role in decisions surrounding their healthcare. Despite variability in individual wishes, participants made it clear that they wanted their views respected.

Second, patients want to be able to make an informed decision about their healthcare, with knowledge of all pertinent facts. Many felt that there were given inadequate information about their care, limiting their ability to make fully informed decisions. This area of concern also extended to the role of healthcare practitioners and the importance of trust between a patient and a healthcare provider.

Third, patients were concerned about contextual factors in decision-making. As an example, family is very important when it comes to making decisions, and members can heavily influence a patient’s choices. Other key contextual factors included social groups, disease progression, and feelings of hope.

The fourth theme concerned pitfalls of care, with many patients complaining of being given inadequate or even deeming care, and care that can often be difficult to access. “And now I get pats on the cheek or, worst of all, on the head, like a child. So I hate it. That patronizes compassion. So far from compassion and empathy,” one patient in a study reported.

“Participants’ views were framed by the context of their lives and experience of their illness and these shaped their engagement with end-of-life care,” the researchers concluded. “Given the varying disease trajectories, care needs to be individualised and needs-based, implementing palliative care in a timely way to prevent crises and loss of autonomy.”

Death is never a topic of enjoyable conversation, but something that has to be addressed when you have a terminal disease. My Type A, need for control self is thankful for the opportunity to be involved in my end of life care. It’s not my favorite thing to plan but it’s on the to do list.

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