What the coronavirus pandemic has highlighted is the importance of having End-of-Life conversations with our families about our medical and health care preferences and wishes as part of our Advance Care Planning.
COVID-19 is changing both the way we live and the way we should think about dying. It has forced us to be more aware of and confront the realities of our mortality. Even during times of uncertainty, there are choices we can make about how we approach living and dying.
Deciding how we wish to approach death is an intensely personal choice based on what we value.
What is Advance Health Care Planning, and why is it so important?
The relevance of talking about and documenting your health care preferences is more important than ever in today’s environment. Many people are hesitant to talk about their death and view it as offensive and distasteful, so avoid talking about the subject totally. End-of-Life Conversations are important to have with family even before the COVID-19 outbreak.
Advance Health Care Planning enables people to reflect on what is important to them and what interventions they would want if they became critically ill. Some people will want everything that can be done to preserve their life such as resuscitation, intubation, IV hydration etc. Whilst others are accepting and allow nature to take its course, wishing only to avoid unnecessary pain and suffering.
There’s no time like the present to sit down with your loved ones and start having that important End of Life Conversation about Advance Care Planning. You need like the rest of the community to prepare for the situation where you may not be able to make your own health care and medical decisions if you become seriously ill and cannot speak for yourself.
Otherwise, if this situation occurs, your family will probably demand the medical team to do everything possible to save your life regardless of the consequences that may affect the quality of your life if you survive. When sadly, the fact is that this may be the last thing that the dying person may have wanted.
END OF LIFE CONVERSATIONS ARE ESSENTIAL
The 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 begin the conversation.
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 regarding further treatment or palliative care options if they cannot effectively communicate.
There is a significant difference between people’s best intentions and the reality of what occurs.
This is because of our society and culture, which is traditionally in denial over death.
Everyone, especially those with a serious underlying medical condition, should start having this conversation with their family and doctors. These conversations should include discussing what matters most to them, considering what treatment they are willing to undergo for a chance to get better, and quality of life. But they are different for everyone.
WHY DO PEOPLE AVOID END OF LIFE CONVERSATIONS?
Amid the constant news coverage and chaos surrounding the coronavirus pandemic exists an underlying fear of death and the realisation that life is fleeting — yet very few of us talk about how we want to exit this life.
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 member
These points highlight some 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.
Sadly, the results of a national survey in 2018 found the number of people doing advance care planning is dismal as
68% of people have yet to have this important conversation. (2)
Engaged couples make” wedding plans” and pregnant women go to the hospital armed with “birthing plans” How many of us have ever reflected upon a detailed “End of Life Plan?”
We will inevitably be talking about and exposed to the potential of death during COVID-19. It is a grim reality, but a reality. This pandemic is in addition to the various End of Life events that are still occurring every day. People are still suffering from strokes, heart attacks, and the later stages of cancer and dementia.
It is vital we start talking about the End of Life before it is too late. With day-to-day life feeling uncertain, it’s more important than ever to know that you have discussed what you want for your end of life.
Approximately, 53% of people say they would feel
relieved if a loved one started “the conversation.” (2)
The coronavirus pandemic, however, has made;
- drafting Advance Care Plans
- making Advance Care or Health Directives, and
- having End of Life Planning Conversations
even more essential.
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 insist that medical treatment continue. This is 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 life.
Why having End of Life conversations matters for your family
Family members who must make life or death decisions in an ICU when they have had no conversation with their critically ill loved one experience post-traumatic stress — they become depressed and anxious. This should not be a surprise to anybody.
We know that people are dying from a range of other serious illness every day, even before COVID-19. We all have been told that if you have a serious underlying chronic health problem, you’re more at risk to dying. If you had an underlying chronic illness, and you knew that getting COVID-19 meant your chances of survival were less, you should be talking with your family today.
You can start your End of Life family conversation as
“Look, I’m not feeling well, and I know I need to go to the hospital. But if
things don’t go the way we hope, here’s what I want you to know…….. and
I want you to do…..”
“I was thinking about what happened to … and it made me realise that ….. being able to ….. is the most important thing to me…”
Remember, the big difference with this outbreak of the coronavirus is that your family are no longer at your bedside because visits to hospitals, aged care and hospice care facilities have been all but banned.
END OF LIFE PREFERENCES NOT DISCUSSED
Having an End of Life Conversation with a loved one about your End of Life wishes and care is important.
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 medical 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 service can cause the delivery 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 powerful reason to encourage having End of Life Conversations and to avoid the common End of Life Planning mistakes.
REASON FOR END OF LIFE CONVERSATIONS
The medical care a loved one receives as they approach the end of their life will impact everyone. An End of Life Conversation will also reduce stress, depression, guilt, trauma and anxiety often suffered by grieving family members.
The purpose of an End of Life Conversation is to enable everyone the opportunity to discuss and explain their individual expectations or what their planned wishes are. This will improve the current situation that is confronting many families when determining the best care required whilst respecting the wishes of loved ones as discussed during End of Life Conversations.
“Being prepared for one’s death is a “gift to your family”.
You relieve your loved ones of the burden and guilt of having to decide … whether someone lives or dies.”
So how do you broach the subject with your own family?
The simplest way of starting an End of Life conversation involves sitting down and having a conversation with your:
- close friend or
- substitute decision maker
Although difficult for many people, this conversation about dying long before any life-threatening situation develops is important.
Some areas you should consider before having your conversation should include:
- personal, and
- spiritual care
Your family will be grateful if they know they are making the right decision on your behalf.
Remember, having these conversations and writing up an advance care plan should be done by everyone and updated regularly and not just thought of as important for the older family members.
Advance Care Planning
The advance care plan or directive — also known as a living will — is a document that specifies which medical treatments you would want to receive if you were:
- seriously ill, or
- otherwise unable to make your wishes known.
You need to prepare for a scenario where you may not be able to make their own medical decisions, so make an advance care plan. Advance care planning is more important than ever in these uncertain times.
An Advance Care Plan can be as detailed as you want,
- explaining the extent, you would want the medical professionals to go to keep you alive
- what you would want them to do to keep you comfortable, avoiding invasive interventions and allowing a peaceful and supported End of Life.
- It even can contain instructions about donating your body to science or donating your organs after death.
With the current impact of COVID-19 the prospect of becoming suddenly and seriously unwell should be a concern to everyone.
You would not want your family and loved ones to be torn apart arguing over deciding whether you would have wanted to be kept alive on machines. All the while you are suffering needlessly as all that poking and prodding that occurs in hospitals often only serves to prolong death, not life.
Advance Care Plan or Directive?
After having the important End of Life Conversation, a loved one’s decisions and wishes which have been discussed should be written in both an Advanced Care Plan and in an Advance Care and/or Health Directive.
Advance Care Plans and Advance Care 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.
The 3 basic steps for Advance Care Planning
Many people have the best intention to organise an Advance Care Plan for themselves but invariably they procrastinate over it and it is always placed on the bottom of any to-do list. Ironically, we spend more time planning our next holiday but not our end of life or exit plan!
The following are a few basic ways you could start your Advance Care Plan
1) Contemplate: Ask yourself a range of questions and think about your answers such as:
- What is important to me?
- What makes life worth living?
- What would I not want to be able to do in my daily life?
- What quality of life would be unacceptable for me?
2) Have the Conversation: Most people find this can be the hardest and most confronting step, but the most crucial.
This exercise is useless if you do not share your values, beliefs, preferences and wishes with those who will be involved in deciding about your medical care when you cannot speak on your own behalf to your family and doctors.
3) Correctly Documented: Ensure you document your wishes in writing and appoint your substitute decision-maker in accordance with your State’s legal requirements for Advance care plans and Advance Care Directives.
Substitute decision-makers are also known by different titles depending on the Australian state you are living in. These include:
- Substitute decision-maker (South Australia)
- Enduring Power of Attorney (Queensland and ACT)
- Enduring Guardian (Western Australia, New South Wales, and Tasmania)
- Medical Enduring Power of Attorney (Victoria)
Writing up your Advance Care Plan
It is important so if anything happens to you everyone including your family, carers and the doctors and nurses looking after you know what to do or not to do.
The forms and requirements for writing your advanced care plan and making a medical decision vary between the states. If you are permanently moving state or territory, you should update your documentation using the recommended form(s) in consultation with your doctor or substitute decision-maker.
Usually, a valid Advance Health Directive will apply in other places in Australia, although there may be some limitations and additional requirements. Likewise, the Enduring Guardian you appointed will usually apply, but there is variation in the laws within the various States. It is recommended that you obtain specific advice for the state you live in.
It’s important to make decisions regarding your End of Life care before those situations arise. Thinking about End of Life is not something any of us particularly want to think about but.
“it’s always too soon until it is too late.”
DON’T WAIT TALK TODAY
Start your Advance Care Planning by having an End of Life Conversation sooner than later with your loved ones. The earlier you communicate your wishes for your End of Life, through your Advance Care Plans and formally documented in an Advance Care Directive is important and realistic for all involved. 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.
Advance Care Planning Article References
- Inquiry into End Of Life Choices, Parliament of Victoria Legislative Council Legal and Social Issues Committee June 2016, ISBN 9781 925458 39 8
- The Conversation Project Survey was conducted by Kelton Global 2018
- 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
- Start the Conversation, Australian Government Department of Health – 18 April 2019.
- Dying Well, Hal Swerissen and Stephen Duckett – Set 2014 Grattan Institute Report No, 2014-10 Sept 2014
Other sources referenced for this Advance Care Planning article
- Advance Health Care Planning, Stanford Medicine- Palliative Care Centre of Excellence – website viewed 22 April 2020
- Advance care planning: The importance of expressing your medical wishes Author: Ruthann Richter Published on April 17, 2020
- Advance Care Planning Australia website viewed 22 April 2020
- The Conversation Project website viewed 22 April 2020
Advance Care Planning FAQ’s
What does Advance Care Planning involve?
Should Advance Care Planning start with an End of Life Conversation?
Before you record your decisions and wishes in an Advance Care Plan you need to reflect on what would be important to you at the end of your life. Then discuss your wishes for your care with your trusted loved ones. This End of Life Conversation will help them better understand your decisions and final wishes.
What is the difference between Advance Care Plan and Advance Care Directive?
Advance Care Plans are the means by which you can make plans about how the doctors should manage your health care needs in the future. Advance Care Directive is a legal document informing health care professionals about specific preferences or kinds of treatment that you would want or not want no matter how ill you are but are unable to communicate your wishes yourself
What are the Benefits of Advance Care Planning for your family?
Helps to ensure your family are aware of what decisions you would want to be made on your behalf if you are unable to have a say. Your family will feel more confident with the decisions they make on your behalf are what you would have wanted. Stop unnecessary family stress, anxiety and disagreements when deciding on the type and extent of medical intervention.