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We are very pleased to have Viktor Burcevski write for The Nurse Break about the conversation no one wants to have…
Victor is a Registered Nurse, Public Health Practitioner; Clinical Psychologist in Training and a Business Owner. He has worked in a variety of fields including emergency and remote areas and health promotion. Victor also operates his own IT business.
The Conversation No One Wants to Have
Advanced Care Directives or Advanced Health Directives (AHDs by those in the biz), as they are known in Queensland, are the current flavour of the month. They have been around for a long time and they allow an individual to provide direction on their future care needs, if they are no longer able to communicate them personally. In other words, it is a formal way to give instructions about your future health care. It comes into effect only if your cognitive health deteriorates and you become unable to make your own decisions (i.e. lose capacity to make decisions).
An Advanced Health Directive:
- outlines what medical treatment or health care you want if you can no longer make decisions for yourself. It can be general (e.g. that you wish to receive all available treatment) or specific (e.g. that you wish to decline a certain medical treatment);
- enables you to appoint an attorney for health and personal matters; and
- includes information that health professionals should know, including health conditions, allergies, and religious, spiritual or cultural beliefs that could affect your care.
Many of you may have watched the recent television program ‘Insight’ on SBS (http://www.sbs.com.au/news/insight/tvepisode/do-not-resuscitate) which highlighted the complicating factors that can come about when those within the ageing population do not specify their wishes around resuscitation in the event of a life-threatening incident.
“Mike Gale was dead for four minutes before being revived without any complications. But he is in the minority. CPR can be a brutal process – in hospital the survival rate is around 15 per cent.”
CPR can be a punishing procedure, often with the benefits (that is if you are lucky enough to be brought back from the other side) being far outweighed by the risks, especially in those that are already frail or already suffer from numerous comorbidities. As health professionals, we must always find a balance between saving life and providing quality of life, once that life has been saved. It is all good and well to bring 97 year old Mavis back from death, but what good is it if she is no longer able to speak or mobilise, or if her injuries from the CPR procedure are so extensive that her life expectancy is now halved?
And where are the families in all this? Have they been consulted or even informed in the matters around end-of-life planning for their mother and grandmother? Too many unanswered questions, sadly all pointing to one direction…the needless suffering of the patient.
Starting the Conversation about “A Respectful Death
As I see it there are two major problems that impede the proper and effective planning of end-of-life pathways, and what constitutes ‘a good death’:
- The medical-model of health care and,
- Poor planning and implementation
The medical-model of health care’s focus is simple, to preserve life!
Doctors, more often than not, are so focused on whether they can extend the life that they do not stop and think if they should. In fact, the medical model should play a very small role in end-of-life planning.
The medical model does not capture a person’s wishes, beliefs or values in their end-of-life, the one time when these questions are imperative. Furthermore, our nurses are not taking the initiative to have these “difficult conversations” with not only their patients, but also their families.
“End-of-life care, including AHDs, are a basic human right and need to be made a national priority”, said Jenny Davis last week at the Australian Association of Gerontology National Conference. The current system doesn’t even come close to showing the kind of respect our ageing population deserves, especially when it comes to their choices about death. This statement ties in very well with the current culture and policies of our residential aged care sector.
Since no coordinated national approach actually exists around end-of-life care planning and mandatory AHD implementation, many residential aged care centres simply ignore the issue until it finally explodes to the surface, usually with very dire consequences, and usually this leads to an emergency room admission, where the health care staff will then once more implement the medical model of care.
Are we starting to see the cyclic nature of this issue? It’s a merry go round that is costing us more than just hospital beds and funding, but untold anguish and frustration on not only the families of those the patients, but also the staff that care for them.
“Prior Planning Prevents Poor Performance”
The solution is simpler than we may think; it is all about planning! From the very first day a resident enters into a residential home, the paper work for an AHD should be placed directly in front of them. Now I know many will say “well I wish to die within my own home, this residential care garbage does not apply to me”. In fact, 70% of Australian wish to see out their life within an environment that is of their choosing. Sadly, only about 14% make this a reality. Many will pass away either within residential aged care, or within an acute care setting or hospital ward.
Regardless of setting, AHDs and end-of-life care planning has to be the norm, and not an exception, held only by those that are forced into facing death at a younger age due to chronic illness. Due to the continued changes within the aged care field, people now enter residential aged care much frailer, within various states of cognition, and as the population continues to age at 1000 people turning 80+ on a weekly basis, it is going to reach boiling point in the very near future.
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