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AUSTRALIA needs to rethink its approach towards caring for terminally ill and elderly patients, with new research finding that many people who are suited to palliative care spend their last days in hospital.
Using death registration data, researchers analysed the last year of life for 1071 Western Australians who had medical conditions amenable to palliative care such as cancer, chronic heart failure, HIV/AIDS or Alzheimer’s disease. (1)
The research, reported in the MJA as a rapid online publication, found that the patients were admitted to hospital, on average, eight times in their last year of life, for an average of 6 days per admission. Seventy per cent of the cohort had an emergency department visit.
The researchers questioned whether emergency departments were being used as a substitute for community care, and said health service delivery for the terminally ill needed more careful consideration.
“The heavy reliance on the acute-care system does not necessarily reflect the most appropriate use of resources for patients at the end of life,” the authors wrote.
The study also found that although the patients lived in the community, 62% of them spent the last day of their lives in hospital.
This contrasts with community preferences for place of death. An online survey released today by Palliative Care Australia as part of Palliative Care Awareness Week found that 74% of people who had thought about their preferred place of death wanted to die at home. (2)
Another rapid online article in the MJA reports a dramatic increase in the use of emergency ambulances, especially in people aged over 85 years, beyond that explained by demographic changes. (3)
The study analysed all emergency transportations (more than 2.2 million) in Melbourne over a 14-year period from 1994 to 2008.
The rate of emergency ambulance use per 1000 people increased from 32 to 58 during the 14-year study period. Among the 85+ age group, the rate of use per 1000 people increased from 248 to 474.
The researchers said that emergency transport use was an important determinant of emergency department attendance. The increase in ambulance use is likely to have “major effects” on acute hospital capacity, the authors wrote.
“In a climate of global financial constraint, we believe our results indicate an urgent need for a coordinated response by policymakers and service providers to this increasing demand,” they write.
The researchers called for more innovative models of out-of-hospital care, and suggested that health workers needed improved training to meet the special care needs of older Australians.
“This includes acknowledgement of limitations to care, especially with respect to aggressive treatment being inappropriate in very elderly and palliative-care patients.”
– Sophie McNamara
1. MJA 2011; May 23 (rapid online publication).
2. Palliative Care Australia: We need to talk about dying.
3. MJA 2011; May 23 (rapid online publication).
Posted 23 May 2011
Rob Loblay makes some very good points. For every ‘terminal’ patient who is offered, and chooses, to cease or not undertake treatments that are likely to extend his or her life, there is another who wants to live as long as possible, even under circumstances that seem to others to represent a poor quality of life. Ultimately we can educate the community as much as we like, but it does come down to the choice of the individual patient. More investment in community care will not necessarily change the equation; some of the patients I have recently admitted have been either bought in or encouraged to present by community nurses. And wouldn’t it be expected that there would be a relatively high rate of hospital admissions in the last year of life? That is, after all, when people are at their sickest.
The side effect of constantly finding new treatments is that we are pursuing active treatment for many conditions that were previously considered to be terminal – it is getting harder and harder to say “there are no more treaments that can be offered” because it isn’t true and the community thinks that they are obliged to live if there is still treatment possible. When I speak to patients about advanced care directives they think that refusing treament is the same as euthanasia.
As we treat cancer later in life with chemo (though already having other significant chronic diseases), as we treat heart failure, heart disease, renal failure – in later life we are on the active treatment trajectory and so something else comes along and the expectation is to actively treat.
The language of end of life needs to be changed
The community needs to be educated.
And of course more investment in community care rather than in hospital care.
While we can all point to cases of inappropriate hospital referral when death is expected, that is not what the authors or the article were looking at. Their statistics were taken from patients identified from the register of deaths with conditions for which “…the primary diagnosis
recorded on the death certificate was a condition considered amenable to palliative care.” [Remember, life is also a terminal condition amenable to palliative care.] The authors conclude that “…Our study confirms that there is extensive use of inpatient services and EDs in the last year of life by people whose deaths are clinically expected” and that providing more appropriate care “…requires an intimate knowledge of the trajectory of each disease…” These conclusions suffer from two fallacies. One has to do with hindsight. They defined death as “clinically expected’ on the basis of knowledge that the patients had, in fact, died. If I had a crystal ball it would be easy to tell in advance that this person is going to die in the next 12 months, and it is now time to make decisions about what kind of terminal care I should offer them. However, while there is still a realistic prospect of successfully treating some intercurrent illness or a potentially reversible exacerbation of an underlying condition, thus restoring a reasonable quality of life, patients, families and doctors will always look on the optimistic side of things and choose active treatment in the hope of a good outcome. The other fallacy is one of statistical generalisation. It is simply wrong to imagine that in most people it is possible to predict their “disease trajectory” with a sufficient degree of accuracy to be useful in making value judgments about clinical care in their last year of life, especially when you don’t yet know for sure that this is in fact going to be their last year of life.
I also work in emergency medicine and one of the challenges that we see from nursing homes is that many staff are “agency/ bank/ otherwise don’t know the patient” – and concern from staff re implications on themselves if a patient dies in the nursing home.
Also there is a paucity of end of life care paperwork being completed from the community. Perhaps end of life care needs to be discussed AND documented whenever a patient enters a high care residential facility.
While New Zealand and UK have great hospices in small towns , we in Oz have missed out. The health dollar is divided between health and ageing, these terminally ill patients are neither. Their voice is never heard since they are a dying breed. The only plausible and practical solution is community hospice system based on NZ, UK, Canada and the US. Our pollies and health professionals should urgently think about the hospice solution.
When I was in charge of a metropolitan ED, we frequently received aged patients – often terminal – for care during dying. Many of these came because of pressure from relatives because they had seen marvellous improvements previously, from blood transfusions or similar. It is difficult to know whether this is the result of nursing homes avoiding the work, GPs failing to tell the relatives that there is nothing else that a hospital can usefully do, or just relatives who have seen too many TV “marvels”. Why does nobody die nowadays? They lose the battle, pass away – all manner of euphemisms!
Why can we not educate our patients to understand that death is normal and inevitable, and is not a need for emergency department care?
FACEM – now aged 81.
I work in emergency medicine. It is very depressing to see the number of palliative elderly patients from nursing establishments who arrive at our doorstep. This may be despite the best efforts of their relatives who sometimes (though rarely) are well aware of the torture the hospital system may put their loved one through. When will we wake up to treating these people appropriately with dignity, care and respect.
I’m sure these qualities are in abundance, however, and the view I get is probably biased. But there must be a better way to care for someone in this situation. Do we need outreach teams from the hospital, or can the GP provide this service to his/her patient. Perhaps some sort of “Care Contract” between the patient, the relatives, the GP and the nursing home which outlines (for a set period, eg, 6 or 12 months), what will happen if the patient gets sicker. Not just a knee jerk “call an ambulance” reaction.
Maybe what is needed is a special mobile service to provide medical and nursing support for the elderly in their home. Instead of an ambulance taking the elderly person to hospital a specially trained palliative team could come in a reasonable period of time (maybe within an hour) to the patient’s home. In the Eastern Suburbs of Sydney for example they could operate out of a facility like the War Memorial Hospital in Waverley and other such facilities in Sydney and other States.