7 Steps on How to Begin an End of Life Conversation
Now is the best time to start an End of Life Conversation with your loved ones. If you are only now considering having this conversation whilst in a state of shock and trauma standing in the Intensive Care Unit of a hospital, it’s probably too late.
Family members and friends may be opposed or unwilling to even contemplate having this conversation. There can be a range of reasons why not – but death is guaranteed, inescapable and it can strike at any time?
The focus of an End of Life Conversation is to:
- ensure a loved one’s wishes are known and clarified if needed and
- have the wishes acted upon
These wishes might include:
- treatment preferences and care and
- the desire to achieve a “Good Death”
By taking your loved one’s wishes into consideration will ensure their values and dignity are respected. It will reduce the amount of stress, guilt, strain, and concern to the bereaved family. This is in contrast to what families that have not had the End of Life Conversation experience.
The peace of mind that such a conversation has for all the parties involved should never be underestimated.
Steps in the Preparation for an End of Life Conversation
Before beginning an End of Life Conversation with your loved ones, Planned Wishes suggest you should consider these 7 steps.
1. Prior Preparation for EOL Conversations
The first step is preparing for the End of Life Conversation and to appreciate how difficult this may be for some people.
Here are 2 suggestions to prepare you for your first conversation.
- complete your own Advance Health/Care Directive (Living Will document) before you try to talk with others about their End of Life Wishes
- you can write a legacy letter to yourself, or to a loved one after reflecting upon your own life.
The letter should cover the following areas:
- detail your wishes
- state your values and beliefs
- your hopes and dreams
- any life lessons and any regrets
- family history and
- concerns and preferences for your End of Life Care
By writing a Legacy Letter it will help you to focus on what you would like to share with others when you die. This becomes a powerful self-discovery tool.
Consider having a trial practice conversation with your partner or a friend you trust. One way to begin this process is to ask yourself a question like ‘What matters to me at the end of my life is…’
By completing one of these processes it will draw your attention to considering the answers to questions you may not have thought about. The process cannot be completed in one session.
Most people find this process confronting and difficult. It will help you clarify what’s most important to you by organising and focusing on your thoughts. You will be mentally prepared before you start an End of Life Conversation.
Research Options First
Research the options for End of Life Care so you are fully informed before you start a conversation. Become familiar with Palliative Care and Hospice Care options in your area. This reassures your older loved ones they don’t have to feel frightened of losing their independence and being “put into a home to die out of sight”.
2. The Setting for Family Conversations
When determining where an End of Life Conversation will be conducted there are some factors you should consider. These include:
- the age and thus the viewpoint of the person you wish to broach the End of Life Conversation with
- younger people are often not concerned with the subject because the concept of death and dying seems so distant for them – it has not yet become part of their mindfulness and
- older people may not be comfortable talking about feelings or expressing their personal needs or wishes. Due to the realisation that their time to face mortality is fast approaching may increase their discomfort about the issue.
These conversations can be challenging, but the following suggestions may help:
- determine when the time and location would be ideal for the conversation to occur
- consider your family dynamics it may be wise to inform all parties of what you wish to discuss so the conversation doesn’t take them by surprise
- adult children may know from experience it’s best to initiate an individual one-on-one conversation with their parents. For example, success is more likely with a conversation with the mother before approaching the father
- other families would find it less daunting to raise the subject during a relaxed family interaction. This could be a family dinner or barbeque on a Sunday where most of the immediate family are present
- others may prefer to organise a family meeting traditionally used to discuss important matters or resolve situations. At this meeting, it would be ideal to have all the family members take part in ensuring everybody can raise points or their opinions
- If all the family cannot be physically present utilise technology such as Skype
3. Starting The Conversation
To ensure greater acceptance of an End of Life Conversation, especially when involving elderly parents setting the right atmosphere is very important.
There are several techniques you can use to start an End of Life Conversation.
The following examples have been provided to help you.
Relate it to your family’s previous experience
Begin by asking your loved one to tell the story of the circumstances of how one of their parents died based on their recollection of events. They will often provide you with details and prompts from which you can use to begin your conversation with them.
Example “So were you sad that Granddad died in hospital and not at home?
What would you like to happen or change when your time comes?”
Base the question on an earlier experience
Many of us have knowledge or experience of someone who has died. You can draw on this to develop a conversation of what you would want or want to avoid in a similar situation.
You could recall where a friend’s parent appeared to have a “Good Death”. They had made an End of Life Plan and their wishes were followed.
Alternatively, you could provide an example of a death that was particularly painful and lengthy. Where the remaining family had a great deal of stress and associated guilt.
For example, “When my friend’s mother-in-law died, she was in her 80s, suffering dementia, and died at home surrounded by her immediate family. In contrast, her husband was diagnosed with cancer.
After several operations and chemotherapy treatments in which he endured many months of very poor quality of life. He was finally admitted to a palliative care hospital where he died.
From these experiences, my friend has decided to prepare his own Advance Care Plan after conversations with his family.”
Relate it directly to your concerns.
An example of how you could raise the subject would be by saying
“I was thinking the other day about what would happen to ….,
and it made me realise we need to talk about this ..…”
“I need to think about my future. Can you help me?”
Use an example from a TV program or something currently in the news
You could use an example of something you had watched recently on a popular TV program or from the news. The conversation could begin by saying something like:
“Did you watch the episode on ………. in which ………. was on life support and the family had to make a decision whether to turn it off or not?
What would you have done in that situation?”
As people age, they develop very strong opinions and preferences about:
- their health
- the type of care they would like to receive
- the amount of medical intervention and
- quality of life.
This is highlighted by the increased number of people around them being diagnosed or suffering from various conditions or terminal illnesses.
4. The Conversation
Be specific with the questions.
- use guided or open-ended questions
- try to have the questions answered as specifically as possible
- seek clarification if required.
The timing of the conversation is also important. If not ideal the loved one could become overwhelmed and not communicate. Depending on the person it may be advisable to provide them with set questions before the conversation for them to reflect upon. Remember to negotiate a date with them to recommence the conversation.
The type of questions you could use could include:
- How do you want to live your life when approaching the end of your life?
- When, if at all, would you accept a feeding tube?
- How about a ventilator?
- How long would you accept being on a ventilator or life support machine if the doctors felt it was unlikely you would be able to communicate with anyone?
- Where do you wish to die – at home, in a hospital or in a palliative care facility?
- Who would you like to be surrounded by – a group of people who know you or just close family?
- What kind of medical treatment do you want?
- Who would you like to speak for you to make medical treatment decisions if you cannot speak for yourself?
- Who do you want as your primary carer?
- What kind of funeral services do you want?
- Do you prefer an open or closed coffin, cremation or donating your organs?
- Where do you want to be buried?
- Do you have a burial plot already?
- Will you want to use it, or be buried somewhere else?
Don’t hesitate to explain the need for such specific questions. This will provide a better understanding of your loved one’s wishes.
5. Put it into Writing
An End of Live Conversation, should lead to a plan of what your loved ones want in the event of a life-limiting illness. This helps ensure your loved ones wishes are respected and are followed keeping with their values and beliefs.
By having a conversation today, you give your loved ones and the family comfort, regardless of what the future holds.
To guarantee your loved one’s wishes are followed it’s advisable that they are in writing. This can be in a legally binding form or a general document that provides an accurate overview.
There are legal and medical documents that should be considered and completed once you have had an End of Life Conversation.
Advance Care/Health Directive (Living Will)
The Advance Care/Health Directive is the formalisation of the End of Life Conversation or Advance Care Planning. These documents are recognised by common law or specific legislation in all States of Australia.
The Advance Care/Health Directive is a legal document that you need if you want to inform others of your wishes before you become unable to do so. This document is often referred to as a Living Will and it provides directives for your loved ones including:
- preferences for future care
- stipulates wishes regarding medical treatment – particularly the refusal of life-extending medication when death is approaching and
- the appointment of a substitute decision-maker to make decisions about health care and personal life management.
At the very least encourage your loved one to write a Legacy Letter. Encourage them to provide copies to the immediate family or inform you where this document will be stored.
End of Life Conversations may stall due to the resistance of your loved ones. If the initial conversation fails:
- review your approach and timing
Ask yourself was there any other factors that may have caused the resistance of your loved one’s not wanting to engage in this conversation?
It may be that your loved ones:
- fears approaching their End of Life
- disinterest through denial
- lack of information about what you are attempting to do for them
- worried about saying the wrong thing and upsetting you
After a suitable time has elapsed from the initial attempt, consider when the next ideal opportunity would present itself. Remember to reassure your loved ones that you do love them and want the best for them.
Hopefully they, in turn, will realise that having the conversation will lessen the burden placed on you upon their passing. So consider approaching them in this way, ask for their help and support to break down the resistance.
The time to talk may not occur until your loved one has been diagnosed with a life-limiting illness. You need to understand that it may help them to talk to family and friends. This reassures them that you are cognizant of their wishes and preferences as they are approaching the end of their life. You have to be tolerant and persistent.
Occasionally some people just do not want to talk about the end of their life or wish to inform you of their preferences.
7. Continue the Conversation
This is only the beginning of this vital family dialogue. The initial conversation is often the most difficult. Revisit the topic periodically to discover if your loved one’s wishes have changed and make sure they have updated them in writing.
Planned Wishes Can Help
Planned Wishes doesn’t promote any particular preference for End of Life Care. We attempt to make people consider and communicate their wishes long before a medical emergency occurs.
“Planning for death before you die is for
everyone’s benefit and peace of mind”
Planned Wishes assists people in End of Life Planning. This is achieved by encouraging people to have End of Life Conversations which is a simple yet significant way to improve outcomes for all the people concerned.
What has your experience in starting an End of Life Conversation?
- Did you use any of the techniques as suggested in this article?
- What did you find was the most challenging aspect of starting an End of Life Conversation?
Share your experiences in how you coped in the comments section below.
Information sourced from:
Conversations – Creating Choice in End of Life Care, Australian Centre for Health Research (ACHR) 2016
Inquiry Into End Of Life Choices, Parliament of Victoria Legislative Council Legal and Social Issues Committee June 2016, ISBN 9781 1925458 39 8 – box quote reference Chp 5 exec. Summary p, xxv
Relationships Australia, (2016), May 2016: End of Life Planning, viewed at http://www.relationships.org.au/what-we-do/research/online-survey/
Frequently Asked Questions
What is an End of Life Conversations?
End of Life conversations are what you have with your family to ensure your final wishes are known, your values clarified, your dignity is respected and acted upon. Including your medical treatment, care preferences and how you would like to achieve a “good death”.
Why are End of Life Conversations Important?
End of Life Conversations are important to you and your loved ones. An End of Life Conversaton will ensure your End of Life wishes are known. It will reduce the amount of stress, guilt, doubt and concern that your family will have when they need to make those important decisions about treatment and care options.
What are the 7 steps in preparing for your End of Life Conversation?
1. Prior preparation
2. The setting
3. How to start the conversation
4. The conversation
5. Putting it into writing
6. Handling resistance
7. Continuing the conversation
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