END-OF-LIFE CONVERSATIONS ARE ESSENTIAL
In Australia, we are not usually comfortable with End-of-Life Conversations. We don’t talk about death or dying and we often consider the topic distasteful, so we avoid having this conversation.
This reluctance to talk about death inhibits planning for End of Life care and may result in a loved one’s End-of-Life wishes not being followed.(1) When we are confronted with death when waiting in a hospital emergency department, it’s often too late to start to talk.
The failure of not having an End-of-Life Conversation before a medical crisis occurs affects everyone in the family. It makes it impossible to know exactly what your loved one’s wishes would be in regards to further treatment or care options if they could not effectively communicate.
As death approaches and quality of life is poor, it’s difficult for loved ones to know to what degree and for how long to continue medical treatment. This is particularly difficult when the treatment is invasive, stressful, and likely to further reduce the loved one’s quality of life.
This dilemma can be prevented by having an open and honest End-of-Life conversation with the family as part of being proactive in preparing for the worst-case situation which we know will happen at some stage of our life.
About 90 per cent of people say talking with a loved one about End of Life care is important,
however, only 27 per cent actually do it. (2)
There is a significant difference between people’s best intentions and the reality of what actually occurs.
WHY DO PEOPLE AVOID END-OF-LIFE CONVERSATIONS?
Other reasons End-of-Life Conversations are avoided include:
- families unable to accept that their loved one is approaching the end of their life
- the belief that such a candid discussion would only upset the person
- a fear of appearing cold-hearted
- family relationship breakdowns or
- lack of the having close family members.
These points highlight some of the reasons for a lack of open and frank conversations about End of Life. This also hinders the development and implementation of effective End of Life Care Plans.
END OF LIFE PREFERENCES NOT DISCUSSED
The majority of Australians say they would prefer to die at home. Yet, fifty-four per cent die in hospitals (with 20 per cent dying in intensive care units) and 32 per cent in residential care. (3)
Dying has become institutionalised and evidence shows there is a significant mismatch between what people most often say they want (palliative and supportive services) and the services they actually receive (acute care).(4)
Acute health care is providing treatments and cures – with the goal of increasing survival rates and reducing the death rate. For people at the end of their life, this type of service can result in the provision of medical care that is inappropriate, inadequate or futile. People often must endure unwanted aggressive, costly treatments and suffer from the insufficient management of symptoms such as chronic pain and shortness of breath. (4)
This should be a strong reason to encourage End-of-Life Conversations.
REASON FOR END-OF-LIFE CONVERSATIONS
The type of medical care a loved one receives as they approach the end of their life will have an impact on everyone. An End-of-Life Conversation will reduce stress, depression, and anxiety often suffered by grieving family members.
To improve the current situation that is confronting many families when determining the best care required and respecting the wishes of their loved ones an End-of-Life Conversation should be commenced.
The purpose of an End-of-Life Conversation is to enable everyone the opportunity to discuss and explain what their individual expectations or planned wishes are.
These include considering their:
- personal, and
care requirements they would wish to receive at the end of their life. Although difficult for many people, this conversation about dying long before any life-threatening situation develops is important.
It allows the family to make informed decisions about what their loved one truly wanted. This will reduce the uncertainty of whether they are making decisions in the best interest of their loved one.
A loved one’s decisions and wishes which have been discussed during an End-of-Life Conversation should be written in both an Advanced Care Plan and an Advance Directive. An Advance Care Plans and Advance Directive documents the values, beliefs, and preferences of a loved one. This ensures clarity to health care professionals and family members. It allows for a substitute decision-maker to be nominated. It sets out the person’s wishes as discussed to what resuscitation and other medical treatment they wish to receive. This will provide increased peace of mind for everyone involved.
DO NOT WAIT, TALK TODAY
Start an End-of-Life Conversation sooner than later with your loved ones. The earlier you communicate your wishes for your own End of Life, the sooner you will feel better prepared. Knowing your family is aware of your wishes will lessen the burden on them when the inevitable occurs.
If you want tips on how to begin an End of Life Conversations visit Planned Wishes How to Start and End-of-Life Conversation post.
- Inquiry into End Of Life Choices, Parliament of Victoria Legislative Council Legal and Social Issues Committee June 2016, ISBN 9781 925458 39 8
- IHI. The Conversation Project National Survey. IHI, 2013.
- Broad, J., Gott, M., Hongsoo, K., Chen, H. and Connolly, M. (2013) ‘Where do people die? An international comparison of the percentage of deaths occurring in hospital and residential care settings in 45 populations, using published and available statistics’, International Journal of Public Health, 58, p 257-267
- Conversations – Creating Choice in End of Life Care, Australian Centre for Health Research (ACHR) 2016