Being Diagnosed With A Terminal Illness: What Comes Next?

© Danielle Robertson Consulting Pty Ltd t/as DR Care Solutions

In the lead up to this year's Dying To Know Day (D2KDay), I thought we'd talk a little about... well, death. More specifically, End-of-Life processes and discussions.

As a nation we’re not good at discussing death.

Surveys confirm that around 75% of us avoid the topic and only 15% have documented treatment preferences for our final days.

Yet being unprepared can take an enormous toll on loved ones as they deal with the grief and decision-making on trying to establish what you would have wanted.

If there is no Advance Care Directive (also known as Advance Health Directive in some States / Territories), others will decide on your treatment, not you.

No Will leaves relatives with the administrative burden of following intestacy rules in distributing your estate, rather than following through with what you would have wanted.

Death is a topic for all age groups, particularly given the statistic that a third of Australians die before reaching their 75^th birthday. Of course the most relevant time to discuss end of life planning is on being diagnosed with a terminal illness.

Palliative care specialists have observed that people tend to die as they have lived. Some fight to the end seeking longevity by trialling any available treatments while others seek quality of life and forgo the treatments when the side effects take too much of a toll.

The former group, the people focussed on treatments, can be so focussed on treatments that they become distracted from what is actually happening to them – that they are dying. In what time they have left, they are not thinking about planning for the end of their life.

This can lead to traumatic deaths that leave a scar of grief for many years on those left behind. Their grief spreads to the communities in which they live.

Governments are on to this issue and are spending money to help reduce the grief and stress. The Australian Government funds Advanced Care Planning Australia and Palliative Care Australia, amongst other initiatives, to raise awareness on the importance of planning for death.

Dying well

If you have been diagnosed with a terminal illness, in my experience, in order to “die well” you need to follow up on some matters. I’ve listed the main ones below.

1. Be honest and transparent about your illness with others.

Lead the conversations around it rather than leaving your loved ones to initiate discussion. It will be far easier for loved ones and close friends to process your death if they have the opportunity to talk to you about it. To help you with the conversation, Dying to Talk^[1], is a helpful tool.

The way in which you deliver your news will have an impact on your loved ones. They will remember that moment for the rest of their lives. Keep in mind that.

• Bad news is best delivered face to face.
• Think through the words you will use. You can start the conversation by simply saying you have some bad news to share.
• People tend to have difficulty processing the detail of traumatic news so keep to the main points of your diagnosis. Be patient with your listener as they may ask you to repeat yourself a number of times. It may be too much to raise your interest in end of life planning so flag it for another day.
• The time and place of its delivery can help. Be away from distractions. Delivering bad news in the morning, preferably a sunny one, gives your loved one the rest of the day to process the information, take in some fresh air, and seek support from others.
  
  

2. Gather your affairs.

Gather your affairs in order, and remove as much stress (and costs) faced by your loved ones as you can.

For step-by-step guidance, refer to our complimentary End-Of-Life Planning Checklist - download yours here:

3. Be realistic.

Have pragmatic conversations with your physicians on treatments and likely outcomes. Prepare for the worst-case scenario.

4. Keep your spirits up.

Try to keep your spirits up and try not to leave those closest to you gloomy and depressed. Everyone - you included - will cope better.

Of course, there are obligations on the part of loved ones in raising and discussing the topic of death with you. In an upcoming blog in this series, I’ll canvas those obligations.

It is tough. But my best advice is to seize the situation and get on with the planning.

If you need support and guidance on planning care and support for the end of life, please feel free to contact me, Danielle Robertson at DR Care Solutions, for an initial discussion on how to set up the right care, support and assistance at the right time and in the right place.

Resources

^[1] Dying To Talk