Is the palliative care tide turning for COPD patients?


By Amanda Sheppeard

15 Jul 2016

Patients with COPD are still missing out on specialist palliative care services in Australia, prompting calls for national guidelines to help improve access and public awareness.

Senior respiratory physician, Dr Natasha Smallwood, of the Royal Melbourne Hospital’s Department of Respiratory and Sleep Medicine, said there needed to be a major shift in community understanding of palliative care, national guidelines, and more funding for specialist palliative care services in cities, regional and rural settings.

She told the limbic that there was widespread misconception that palliative care was reserved for end of life, and primarily patients with cancer.

“The community perception of cancer is death, whereas the community perception of COPD is, oh no, I smoked too much and I’m going to get breathless and might need inhalers,” she said.

“Clinics are not set up to have the time to spend with COPD patients to raise this, there are just so many barriers, and if often just happens too late. It’s (COPD) not a serious disease in the eyes of the community.”

Dr Smallwood said a recent article in the BMC Palliative Care journal had revealed less than one fifth of patients with COPD accessed specialist palliative care.

The Western Australian retrospective cohort study looked at the last year of life of persons with an underlying cause of death in 2009–10 from cancer, heart failure, renal failure, liver failure, chronic obstructive pulmonary disease, Alzheimer’s disease, motor neurone disease, Parkinson’s disease, Huntington’s disease and/or HIV/AIDS.

The study found that of the 1094 patients who died from COPD, only 17.9% had access specialist palliative care.

Dr Smallwood said that while this represented an improvement on access rates from 10 years ago, there was still a long way to go.

And Australia isn’t alone. A recent article in the JAMA found families reported better quality of end-of-life care for patients with cancer or dementia than for patients with end-stage renal disease, cardiopulmonary failure or frailty.

This was because patients with cancer or dementia had higher rates of palliative care consultations and do-not-resuscitate orders and fewer died in hospital intensive care units, the authors wrote.

“Most people in the United States die of things other than cancer,” the authors wrote. “Yet, many efforts to improve end-of-life care have focused primarily on patients with cancer. There is growing recognition that patients with other serious illnesses need high-quality end-of-life care.”

Dr Smallwood said these studies highlighted the gap between palliative care services for cancer patients and other conditions, and this highlighted the importance of specialised and integrated care across specialties.

Specialists would need to work closely with these services and be prepared to raise the conversation about palliative care services with their patients.

“It can be incredibly difficult, especially with COPD,” she said. “We know they’ll decline but it can happen over many many years. But sometimes it’s a case of everybody leaving the conversation to someone else and then it just slips away.”

However she said she was hopeful the tide was turning towards a new regime of integrated palliative care.

“We already provide long-term care with continuity of care until death,” she said. “I think that understanding is coming, that palliative care can run side by side with long-term curative care. Palliative care is not about death, it’s about planning.”

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