Why is it that many Australians can choose from over 300,000 health apps for their smartphones, but not their preferred way to receive care for a life-limiting illness?

Has society forgotten about what it means to deal with the final stages of life?

Most people would like to die at home, but few do. And a large number of Australian patients who die in hospital don’t receive palliative care.

Palliative care can offer a sense of choice – choice over how to relieve pain, reduce stress, recover from fatigue, or where to receive treatment. But palliative care, in its current form, hasn’t been around for as long as other medical specialities. Before advances in the science of medicine and technology, life with an illness was often brutally short, with very few options for treatment.

Looking back at the history of care provided at the end of life, and how it’s changed over time, can shed new light on why a sense of choice is so important for people affected by a terminal illness.

Greater choice through palliative care could mean the difference between prolonged and unnecessary pain, and more comfort and a better quality of life.

A brief history of hospitals and end-of-life care

Most people in Australia with a terminal illness receive treatment in hospital. In hospitals, nurses and doctors follow a set of procedures that help to guide care for all patients, such as the use of medicines for relief from pain, when to perform surgery, the management of anxiety and stress, and other issues.

A patient is one part of a big health system supporting a large number of people. To help meet the needs of all patients, hospitals run on routines and systematic practices of treatment. It’s an approach to care grounded in the science of medicine and technology.

The hospital of today is a relatively recent development in human history, however. In 1788, Australia’s first hospital was founded in Sydney to treat convicts and settlers, and consisted of tents and temporary structures on the harbour foreshore. Far from orderly, the hospital simply grew into surrounding buildings as demand for help increased.

Back then, death at home was common. Smallpox, diphtheria and similar infectious diseases were prominent and likely resulted in many people dying, often within a few days.

Family members often provided care, and it was quite limited. Care was focused on the symptoms of disease, and most likely on making sure people were comfortable, and that their spiritual and emotional needs were being met.

The standards of life in towns and cities, such as good quality drinking water and sewerage disposal, were not reliable, either. As a result, dealing with infectious diseases and illness was much harder. The underlying biological causes of many diseases, those tiny organisms like bacteria and viruses, weren’t being addressed, and could spread easily.

It was not until late in the 19^th century that advances in scientific research and medical practice began to change how nurses, doctors and other medical staff in hospitals and clinics treated infectious diseases and other illness. A more refined use of technology like microscopes helped to provide new insights about illness, and the use of drugs and vaccines became more widespread. Treating the underlying causes of disease and illness helped to reduce infectious diseases across many developed countries.

In the twentieth century, as more people experienced the benefits of medical science in hospitals for the treatment of illness and disease, there was an increase in life expectancy. Soon, chronic diseases like heart disease and stroke replaced infectious and communicable diseases. Most treatment for terminal illnesses was shifted into institutions like hospitals and residential aged care facilities.

Later, as the new millennium approached, Australian medical practitioners pushed for greater recognition of palliative care as a form of specialised support. The Australian and New Zealand Society of Palliative Medicine (ANZSPM) was formed in 1993 to help build professional skill and expertise. The society consisted of specialists, career medical officers and general practitioners who provided high quality and effective palliative care on a daily basis.

Around the same time, the Royal Australasian College of Physicians (RACP) set up a pathway for people to train in palliative care. Training was an opportunity to bring more rigour and capacity to the sector. By the end of the decade, the Australasian Chapter of Palliative Medicine (AChPM) was established to help provide advanced training, and guide practice in the emerging discipline. As dedicated professional work and training increased, all doctors had the opportunity of a defined pathway into specialist palliative medicine. The credibility of palliative care in the eyes of the medical community grew.

After much work in the Australian medical community on developing curriculum and application processes, government recognised that palliative care was a speciality. Tony Abbot, Minister at the time, recognised a case was made for palliative care to become a speciality in late 2005, and it was listed on the Medicare Benefits Schedule with item numbers by the end of June 2006. The listing meant that individual specialists in palliative medicine could register to practice.

What’s been gained… and lost

The differences between care for people dying now, and care provided before advances in the science of medicine, are stark. People mostly live longer, even with a terminal illness. There are far more options to choose from for treatment, including more effective pain management. Where care is provided, and by who, has changed as well. Staff in hospitals and aged care facilities provide care for those with a life limiting illness, rather than family in the home.

More broadly, the experience of dying and death is mostly removed from daily life, particularly for those not directly affected by its painful challenges. Care has become institutionalised, and with this, of course, the many benefits of scientifically proven medical practice.

What seems lost now, however, is an intimate understanding of how to meet the specific needs of a person dealing with a terminal illness, and those close to them. Not everyone, for example, will prefer to remain in hospital, use particular drugs, have surgery or other forms of treatment. In the institution, care risks becoming a one-size-fits all approach. In turn, the choices for patients can be very limited.

Fortunately, specialist palliative care services are available in Australia that work with patients to provide more choices over how to improve life with a terminal illness, at home, in hospital or in aged care facilities.

How to decide on the best approach

So what can more people do to improve their sense of choice when dealing with end-of-life care?

History tells us that the experience of dying and death was once quick and part of every-day life, but is now institutionalised, and no longer familiar to many people. Just talking about care at the end of life can be hard, even with doctors and other health professionals.

An important step to take in having greater choice is better understanding and planning for life with a life limiting illness. Existing information resources are available, and can help when deciding what palliative care services are most appropriate, how to manage finances and other aspects of care:

• Asking questions
• Decisions about your care
• Money Smart: Money musts before you die
• Palliative care for children

Knowing more about specialist palliative care services that are available is also crucial in finding better options for support and treatment:

• National Palliative Care Service Directory
• Health Direct App

Throughout history, dealing with a life limiting illness has never been easy. But now, by being better informed, and working with palliative care services, more people can help choose support that works best for them.