Most chronic kidney disease patients misunderstand palliative and hospice care

By Will Boggs MD

NEW YORK (Reuters Health) - Less than a quarter of patients with chronic kidney disease have a correct understanding of palliative and hospice care, researchers say.

"While not surprised that there was poor knowledge I was surprised at the extent of both poor knowledge and the negativity around their perceptions of palliative care," Dr. Sara N. Davison from the University of Alberta in Edmonton, Canada, told Reuters Health by email. "I was also disappointed at how little healthcare providers have added to their knowledge."

Nearly two-thirds of all deaths result from chronic, nonmalignant disease, but only 4% to 7% of individuals are referred for palliative care services, Dr. Davison and colleagues write in BMJ Supportive & Palliative Care, online June 10.

Because little is known about the knowledge and awareness of palliative care and related services among individuals living with chronic kidney disease (CKD), the researchers conducted an interview-based survey of 436 patients with stage 5 CKD in the Northern Alberta Renal Program.

Nearly two-thirds of patients (63.4%) expressed familiarity with the term palliative care, but only 22.2% were able to describe it correctly. Similarly, a third of patients recognized the term hospice care, but only 17.9% could describe it correctly.

Most individuals inaccurately equated palliative care with terminal care, according to the report, and they associated this kind of care with acute hospital settings during the terminal phase of someone's illness.

Other misperceptions emerged from the interviews, including beliefs that palliative and hospice care were akin to nursing home placement, caring for the elderly, home care for basic activities of daily living, and aggressive curative or rehabilitative treatments.

White/Caucasian patients were 12.4 times more likely than non-Caucasian patients to understand the term palliative care, and residents in assisted living were 3.5 times more likely than those living at home with others to understand it.

Accurate knowledge of hospice care and palliative care was significantly higher among those who possessed personal experience with these services or obtained their knowledge from family and friends, newspapers, or television/media.

After palliative and hospice care were described to them, more than 87% of participants felt that these services were valuable and should be offered to patients with advanced CKD.

"Opportunities for healthcare professionals to confidently and competently engage with patients on appropriate palliative care services to address physical and psychosocial needs are urgently required," the researchers conclude. "Improved integration of palliative care and nephrology will likely require better patient, family, and healthcare professional education resulting in an appreciation of the relevance and benefits of palliative and hospice care."

"We need to have conversations with our patients about what palliative care can provide," Dr. Davison said. "Patients need to understand, in explicit terms, the services they can expect and how these services would be anticipated to add value to their care and lives. Palliative care needs to be framed within the context of what we CAN do for you, not what we CAN'T."

Deb Castner, a registered nurse who has studied kidney disease and hospice but was not involved in the new work, agreed more discussion between doctors and patients is needed.

"Start these discussions with new and/or changing diagnoses, especially diagnoses with poor or unpredictable prognosis. Recognize we need to help patients transition from dialysis care to hospice care and it does not need to be one or the other," Castner, from Jersey Coast Nephrology and Hypertension Associates in Brick, New Jersey, told Reuters Health by email.

When talking about palliative or hospice care with patients, Castner said, providers should emphasize that it doesn't mean "giving up on the patient's care; it is approaching it differently where the goal is comfort and quality."

SOURCE: http://bit.ly/1vdOHkE

BMJ Support Palliat Care 2014.

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