Terminally ill missing out on palliative care: Survey reports

According to two new surveys, increased hospital admissions in the last three months of life could be of little benefit to dying people and are in contrast to the wishes of many.

People with conditions known to be terminal, and who therefore should qualify for palliative care in the community, are admitted to hospital an average of eight times during their last year for an average six days on each occasion, the first Australian study on the subject has found. Three months before they died an exponential increase began in the time people spent in hospital, and nearly two-thirds of the 1071 people in the West Australian survey died away from their home the study found. The results confirmed “there is extensive use of inpatient services in the last year of life by people whose deaths are clinically expected”, wrote lead researcher Lorna Rosenwax in the Medical Journal of Australia out today.

She looked at the death and medical records of people who died from cancer and a range of other predictably terminal conditions, including heart, liver, kidney and lung failure as well as HIV/AIDS and Alzheimer's disease, to assess the pattern of hospital use in their last year. For cancer patients she said, “the physical debility appears to have a more precipitous drop” in their last weeks, compared with people with other terminal diagnoses, Professor Rosenwax said. Families and community care services were often not sufficiently prepared for this, she said, meaning people's care then had to be transferred to hospitals “by default”.

In another national survey of 1000 people, two-thirds said they had firm preferences about where they wanted to die, but fewer than half had discussed their wishes with family. Of those who said they did have a preference, three-quarters wished to die at home, versus only 8 per cent who wanted to die in hospital. Patsy Yates, professor of nursing at Queensland University of Technology, said services should support “good symptom control [in the community] but linked well to acute care hospital services when needed”. Professor Yates said patients under the care of a palliative team should be able to enter a hospice or hospital temporarily if their medication or other therapy needed adjustment without having to undergo a full medical reassessment each time.

She is also vice-president of the advocacy group Palliative Care Australia, which commissioned the online study. She also urged people to drop their wishes about end-of-life care into ordinary family conversations. Wills and funerals were often planned in great detail, in contrast to the nature and place of dying, said Professor Yates. “It seems … we are much more confident with ensuring our loved ones are cared for after death.”

A report released by the state government yesterday revealed about 7500 Victorians who die from chronic illnesses each year miss out on palliative care. It said Aborigines and other people from non-English-speaking backgrounds may also be going without help because statistics showed only 7 per cent of palliative care services were being provided to people who spoke a language other than English. The report said demand had been increasing about 5 per cent annually and was predicted to increase sharply in the next five years as the population aged and experienced more chronic diseases such as cancer and diabetes.

State Health Minister David Davis invited people to read and respond to the draft report titled Strengthening palliative care: Policy and strategic directions 2011-2015 in coming months to help the government's planning. He said it would be open for consultation until the end of June with a final report to be released in August. “We are keen to hear from the people who care for people with a life-threatening illness about how this policy and strategic directions can meet their needs,” he said. Mr Davis said the government had allocated $34.4 million for palliative care services over the next four years to help people die painlessly and peacefully.

Dr. Ananya Mandal

Written by

Dr. Ananya Mandal

Dr. Ananya Mandal is a doctor by profession, lecturer by vocation and a medical writer by passion. She specialized in Clinical Pharmacology after her bachelor's (MBBS). For her, health communication is not just writing complicated reviews for professionals but making medical knowledge understandable and available to the general public as well.

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