The default for people who are older and near the end of life when they suffer an acute deterioration is often hospitalisation. They are placed on a conveyor belt – ambulance, Emergency Department (ED), hospital, often ending up on life support in the intensive care unit.
They are not usually recognised as being terminally ill by their treating doctors, the health system or even by themselves. For other disease states, such as cancer we have no hesitation in using the word, terminally ill, meaning having a life limiting condition with an estimated survival time of less than 12 months. Despite abundant prognostic information, this is not usually the case with the terminally ill older people.
The way people die has changed dramatically over the last few decades. As deaths increasingly occur within acute hospital settings, the role of the community and families has diminished.
Ironically, many older people do not want to be admitted to hospitals and most do not want to die there. Moreover, the large number of older frail people in hospitals is a major contributor to the ongoing hospital crises: such as long elective surgery waiting lists; overcrowding in Emergency Departments; and ambulance ramping. Reducing unwanted, harmful, and costly acute services at the end of life care is a ‘win win’ for health services and society.
Instead, the elderly near the end of life are often subject to increasing medications, medical procedures, and non-beneficial hospitalisation. The elderly variably accumulate so-called co-morbidities or chronic conditions, become frailer as their natural reserves decrease. Frailty is a term which summarises the individual diagnoses into one measurable concept, understood by people and increasingly used by conventional medicine to track their deterioration and prognosis.
As the elderly become frailer, they are become prone to a sudden deterioration such as an infections or a fall. How do the terminally ill elderly slip through the health care system? The GP works in a system with limited time for consultations; others such as allied health care workers concentrate on their specialised areas such as muscle strength; and palliative care workers concentrate more on others such as those with cancer. Even Geriatricians in their overarching document, the Geriatric Syndrome, detailing complications occurring as people age, do not include the management of the only inevitable outcome, dying and death.
Once arriving in the hospital, the conveyor belt becomes even more rigid and predictable. Modern hospitals are staffed by increasingly specialised physicians. They are experts in one part of the body. While the reason for admission such as an infection may lend itself to conventional medicine, the longer term outcome is determined by the chronic state of the person’s health. The fact that the person is terminally ill is usually not recognised either by healthcare professionals working in the community or by those working in hospitals.
The age of patients being admitted to acute hospitals is increasing and most people who die in hospitals are the elderly where death is expected and prolonged. Almost one third of emergency calls in hospitals are for patients who haven’t been recognised as being terminally ill until near death. Over one third of hospitalised patients receive non-beneficial interventions at the end of life. This enormous over-treatment contributes to the unsustainable costs of healthcare and causes moral distress to both families and healthcare teams.
When the current health care management of the older frail person coincides with the general denial of death and dying in our society, it results in a powerful complicity. We live in a society which hears daily stories of medical miracles and ‘healthy ageing’ with little genuine discussion of ageing and death. Discussing these inevitabilities has become one of the last taboos in our society, making change difficult.
How do we address this challenge? Until the early 1970s, birthing was medicalised in much the same way as dying is today. That all changed. Perhaps empowering society is the next step. Shared Decision Making is an attempt to empower people to achieve more equality in discussions with health professionals. It is an attempt to see the patient as a person by discussing who they are; what are their attitudes and beliefs; then to move onto how this translates into goals of care that genuinely reflect who the person is. Ideally this becomes the most important document in health and the care of people at any age.
In summary, the following steps may help to provide more appropriate care of the elderly nearing the end of their lives:
1) Identify older people likely to be terminally ill, including the inherent uncertainty which exists in all medical prognoses.
2) All health care providers working with older people and the people themselves need to be aware of those who may be nearing the end of life.
3) Elicit genuine goals of care from individuals and their caregivers.
4) Despite these changes, the elderly and their caregivers face a complex health system, where it is difficult for most to translate individual goals into appropriate choices. A navigator, similar to the central role that breast cancer nurses now play, could assist in ensuring a dignified dying process and choices consistent with their own goals of care.
Ken Hillman
Ken Hillman is Professor of Intensive Care at the University of New South Wales. He has published extensively on the inappropriate care of the elderly near the end of life. He has also published two books, Vital Signs (NewSouth) and A Good Life to the End (Allen and Unwin) as well as delivering a TEDx talk on dying in the elderly.
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