The developed world is experiencing a dramatic shift in its demographics, with rapidly increasing proportions of older people. By 2050, many countries will have over 30% of their citizens aged 60 or over. With this comes a quantum increase in the proportion of people with chronic and complex diseases, and of deaths. Most people who die are old. Most people will die of conditions with a period where death can be anticipated, rather than by a sudden event. Dying over time also brings complex psychosocial and spiritual needs – as Samuel Johnson once said – impending death concentrates the mind wonderfully!
How will society cope with this scenario? It needs to change the way we approach illness, and in particular the care of those who die. The palliative care movement has come a long way since Dame Cicely Saunders began to study the needs of the dying in a systematic way. A highly skilled, comprehensive approach to care at the end of life has developed- specialist palliative care has made a profound difference to the care of people at the end of life.
However, specialist palliative care services focus on the care of people with advanced cancer. In Australia, about 80% of the people under their care have cancer. By contrast 80% of people over 70 years of age die of non-cancer causes - organ failure, frailty and multi-morbidity and dementia.(4) Who looks after the rest?
Uncertainty in disease trajectory is a common thread to all of these conditions, which makes planning for the end of life very different to cancer. We don’t know when they will die, but we do know they will. This is in stark contrast to cancer, where the trajectory to death is far more predictable and time limited, so putting services around these people as they die is much easier to achieve.
The care of this group of people falls to primary care, general medical specialists like internists and geriatricians, and system based specialists like cardiologists. These people live in the community and in aged care facilities, and are found in most of the wards of acute care hospitals. Sometimes they end up in intensive care units. Many have complex investigations and procedures performed, and some will undergo cardiopulmonary resuscitation, regardless of the very low likelihood of success.
We need a fundamental change in our approach to the care of these people at the end of life. Firstly, we need to recognize that we cannot approach their care in the same way as for cancer. We need to meet the inevitability of their demise with contingency plans developed well before the event, and ready to be enacted when crises occur. This planning should include advance care planning, as well as developing clinical care plans for anticipated clinical events. Second, we need to recognize that everyone has a hand in this care. Care coordination is essential, facilitated by reliable communication processes. Thirdly, we need to adopt an attitude of hoping for the best but preparing for the worst, and being judicious about the use of the extraordinary medical technology at our disposal. Finally we need to assist the patients and carers to manage the dying process well – educating and supporting them in both the physical care required and facilitating the psycho-social and spiritual preparations they need to make at this time.
These changes need to take place at the system level and at the level of health practitioners and their interactions with their patients. Care at the end of life is everyone’s business.
This blog is part of a series from the 43rd North American Primary Care Research Group (NAPCRG) Annual Meeting, which runs from October 24-28, 2015, in Mexico. CMAJ is one of the sponsors of the meeting.