Saturday, June 15

Don’t You Want a Say in Your End-of-Life Care?

Nursing Home CareEnd-of-life care is a controversial issue that pits the hopeful wishes of patients against the realities put forth by doctors.

While most see this care as a natural right for everyone, The Lund Report of Oregon states that researchers at Stanford University have found evidence indicating that the quality of end-of-life care can hinge on several factors. These include the patient’s financial means, ability to communicate with health providers, and even family conflicts, as opposed to simply ethnic disparities, as the researchers had originally assumed.

Their findings came as a result of a study of 300 white, Asian and African-American seniors throughout the San Francisco Bay area. The group included 38 African-Americans, 160 Asian-Americans and 117 Caucasians.

The study’s lead author, Dr. V.J. Periyakoil, director of the Stanford Palliative Care Education and Training Program and associate director of palliative care services at the VA Palo Alto Health Care Center, had believed from previous findings that some physicians view talking about end-of-life care with patients of certain ethnic groups to be taboo.

However, Periyakoil’s most recent study suggests otherwise.

Even though all participants cited valuing high-quality end-of-life care, 60% reported experiencing barriers in receiving it.

While there were no significant disparities across ethnic groups, it appeared that those with less education were more likely to cite financial problems as a barrier, and those with higher education were most likely to blame doctor behaviors that hampered communication.

Overall, the patients felt “doctors were just too busy to initiate [end-of-life] conversations, reluctant to listen to their concerns and questions about EOL decision making, and often gave vague responses, making it difficult for the patient to comprehend their choices and make informed decisions,” the researchers wrote.

Fortunately, a new federal policy under Medicare will actually reimburse doctors for discussing end-of-life care with their patients. The counseling will not only cover care after becoming incapacitated, but also the type of treatment, be it minimal or interactive caregiving services, as they approach their last days.

However, ethnic groups and the less educated are not the only ones having trouble finding reliable healthcare. As The Guardian reports, those with autism or learning disabilities are not receiving proper end-of-life medical support, even in the “best place in the world to die,” the United Kingdom.

After a Department of Health-funded confidential inquiry into the premature deaths of those with learning disabilities in 2013, it was found that they on average die 16 years before they should as the result of poor diagnosis and treatment.

There are currently an estimated 700,000 people with autism and another 1.5 million learning disabled people in the U.K. who could one day find themselves in need of end-of-life care.

In order to reverse this unfortunate trend, the British Institute of Learning Disabilities (Bild) will soon launch a guide called “Peaceful, pain free and dignified: palliative and end-of-life-care for people on the autism spectrum.”

This guide will offer step-by-step descriptions highlighting how timely health and social care staff can offer them better care.

“We all wish for a pain free, peaceful and dignified end to our lives,” says Lesley Barcham, Bild’s aging-well project manager, “but for people with learning disabilities or autism, who may not be able to speak up for themselves, it can feel like this isn’t something they can control.”

After questions have been raised over the quality of end-of-life care for these demographics, the exposure should be enough to encourage physicians to make extra effort in communicating about patients needs and wishes.

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