A Dignified End of Life8 December 2009
End-of-life care is a growing area of concern. Frances Penwill-Cook looks at how a little communication can improve care and reduce costs.
The world's ageing population is increasing at an alarming rate, and, as hospital beds and care homes see an influx of the ill and elderly, providing effective end-of-life care at a reasonable cost is becoming increasingly challenging.
US-based non-profit think tank RAND reports that the average life span of Americans almost doubled during the last century. People are also living with chronic illness during the last few years of their lives. Cancer Research statistics reveal that mortality from cancer is falling in the UK despite increasing incidence. In the US and the UK, about 25% of deaths are caused by cancer and follow a period of chronic illness.
Furthermore, the US Administration on Aging predicts that 20% of the population will be above the age of 65 by 2030, double the figure of 2006. In the UK, the Office of National Statistics states that 23% of the population will be aged 65 or over by 2033.
"Levels of disease are growing in younger populations, which suggests the health of the elderly in the future could be worse than the current elderly population," says RAND.
This is also indicated by the US National Center for Health Statistics (NCHS), which claims that the number of people suffering obesity has doubled since 1960. This will increase the number of those suffering with chronic illness at the end-of-life care stage. Cancer Research estimates that up to 13,000 cases of cancer could be avoided if a body mass index of 25 was not exceeded.
This makes discussions on the issuing of end-of-life care relevant now. According to RAND researcher Joanne Lynne, the issues around end-of-life care are a lot more philosophical as opposed to pragmatic, and will take more than a set of guidelines to be produced.
"It includes understanding that end of life should be viewed as a period that spans years, not just weeks or months [and] should be organised by services that people need rather than by disease," she says.
Crux of care
In terms of what people consider important to end-of-life healthcare, it is clear that the majority want open, honest communication about the status of their health. An assessment carried out by the department of medicine at Kingston General Hospital in Ontario, Canada, which looked at the views of 440 patients and 160 relations, found that patients mostly want to have trust and confidence in the doctors (55.8%) and do not want to be kept alive by life support when there was little hope of meaningful recovery (55.7%).
They also wanted to receive information about health problems communicated to them by their doctor in an honest manner (44.1%) and have the opportunity to complete things and prepare for life’s end (43.9%).
When ascertaining where people wanted to die, the UK Department of Health's End of Life Care Strategy found most people wished to die at home. Unfortunately, statistics show that about 60% die in hospital.
So what can be done in the hospital environment to make the end of life easier for these patients and their relatives?
Communication is key
In the US, communication between doctors and patients has been found to be severely lacking. The nation’s fee-for-service model only pays for treatment.
In a study called 'Health Care Costs in the Last Week of Life' – part authored by Holly G Prigerson, director of the Center for Psycho-oncology and Palliative Care Research at Dana-Farber Cancer Institute – only 31.2% reported end-of-life discussions.
It also shows that those who have end-of-life conversations had lower healthcare costs in their last week of living and a better quality of death than those that did not. Prigerson says she believes that aggressive treatment during the end-of-life stage only brings misery to the situation.
Overall, such costs are escalating, particularly when it comes to treating cancer. While health insurance reform intends to cap costs and introduce preventative care, if end-of-life discussions generally translate into decreased healthcare costs and a better quality of death for the patient, then the importance of these discussions is clear.
In order for effective end-of-life discussions to emerge, the system needs to change. For example, those being treated for cancer cannot have such discussions with oncologists.
"Oncologists weren't trained to have those end-of-life discussions," says Prigerson. "They didn't go into oncology to tell people there is nothing they can do to cure their cancer."
The UK has a similar problem. A National Audit Office (NAO) investigation found that, during a detailed examination of patient records in one UK primary care trust, 40% of patients who died in hospital in October 2007 did not require hospital treatment. The investigation also showed that almost 25% had been in hospital for over a month.
A severe lack of end-of-life discussions has been reported as one of the key barriers to the delivery of good palliative care here.
"It identified the lack of open discussion between heath and social care staff and those approaching the end of life," the report said. It also highlighted a "reluctance to discuss issues of death and dying". Where the wishes of people on their death bed were recorded, little was done to follow this up, according to the report.
Last wishes for home
Another part of the problem identified by the NAO was the lack of support given to carers at home. If end-of-life discussions were facilitated and hospital visits decreased, costs would decline. It is argued that savings from this would help fund new end-of-life care strategies.
The NAO estimates that caring for cancer patients in the hospital during the last year of their life costs £1.8bn and that £104m could be redistributed to meet people's preferences by reducing emergency hospital admissions by 10% and the average length of stay by three days (around 25%).
In the UK and US, structures are required that will allow the facilitation of end-of-life discussions to bring down costs and to help offer a positive end-of-life experience.
In July 2008, the UK published its Life Care Strategy, and committed an extra £286m over two years to end-of-life care. It aimed to improve training, planning, dialogue and also facilitate a change in attitude and culture across the royal colleges, professional societies, primary care and NHS trusts and in social care. So far, its changes seem successful.
In the first annual report, following the Department of Health’s strategy, it showed deaths in hospitals, which were increasing, had started to decline and that deaths at home had started to rise.
A case study to exemplify how end-of-care treatment has changed can be seen by looking at the progress of the palliative homecare teams in Salford and Trafford, England, UK, which are now enabling terminally ill patients to be cared for and to die at home.
Initially, only 21% of cancer patients were dying at home, but after the introduction of the strategy about 80% of patients visited died at home while three-quarters of the remaining 20% died in the place of their choice.
Some areas in the US are now starting to consider major policy changes to transform the system. In its July 2009 newsletter, RAND said it was improving quality of care through a range of methods, including measurement tools, financial incentives for providers and information technologies, as well as promoting healthier lifestyle and behavioural choices. It has also recommended that policymakers "create incentives for primary care physicians to seek training and certification in palliative care".
However, in order for palliative care to be integrated and changes made in the US, RAND's Lynne says she believes healthcare providers, insurers and consumers need to proactively work together alongside policymakers to create an effective change, rather than assuming it will just emerge.