Talking about terminal illness, palliative care and death BANNER
FUNERAL PLANNING, GRIEF AND BEREAVEMENT

Talking about terminal illness, palliative care and death

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  • Mel Buttigieg
  • Writer, Bare
  • August 11, 2020
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Death is something that touches everyone at some point in their lives, but coming to terms with it is difficult. Despite death being a natural part of life, most people put off talking about it with their loved ones for so long that they never get around to it. But it’s important to encourage the dialogue.

An overwhelming 82% of Australians think it is important to talk to their family about their end-of-life care, but only 28% actually do it, according to Palliative Care Australia.

Even for aged care or palliative care workers who support terminally ill patients every day, it can often be difficult to know how to talk about death; how to support people facing the end of their life; or how to be there for those who are bereaved. So, we’ve put together the following tips to support those who may be confronted with a person entering their end of life.

  1. How do I break the news about terminal illness or death?
  2. My loved one is declining – how do I notify the family?
  3. Coping with anticipatory grief
  4. What’s the difference between end-of-life care and palliative care?
  5. End-of-life planning: Practical tips for preparing for a loved one’s death
  6. End-of-life resources

 

preparing for palliative care
Coming to terms with death and terminal illness can be difficult, but talking about it is important.

 

1. How do I break the news about terminal illness or death?

As a healthcare provider, you may have to break the devastating news to a patient or their family member or friend that they are dying, or that they have died. You may also need to support the patient or their family who will be telling a loved one of the heartbreaking news. Delivering bad news is never easy, but the way it is done can make all the difference.

When having a tough conversation with a loved one about terminal illness, you might like to consider the following:

  • Having a conversation face to face, if you are able to, is often the best way to deliver bad news. However, it’s not always possible.
  • Give yourself plenty of time to have the conversation or make the call.
  • Ensure that, where possible, you’re in a safe and confidential setting free from interruptions. It’s also a good idea to switch off anything distracting like phones, radios and TVs.
  • If you’re notifying an elderly or vulnerable person, you might want to talk to them (in person or on the phone) when you know there will be someone else with them who can offer support afterwards.

What to say about terminal illness

  • Thinking through what you are going to say ahead of time will help you prepare for the tough conversation.
  • When it comes time to break the news, it may help to ease the shock if you start by saying that you have some bad news.
  • Talk slowly and gently using plain, simple language.
  • When receiving bad news, people will often only be able to take in a small amount. So don’t overwhelm them with all the details up front. It also might be helpful to check that they understand and encourage them to express their feelings.
  • You also want to discuss practical things like end-of-life arrangements, but it may be better to leave those for a separate conversation.

How to support a terminally ill person and their family

The news that someone is dying will likely come as a shock, so the person may need physical space to take in what you’ve said. They may not want to be touched or hugged, so leave the physical contact up to them to initiate.

If someone becomes very distressed and you’re unable to stay with them, you might want to ask if there’s someone you can contact on their behalf who can stay with them.

End-of-life support organisation Dying to Talk offers some other practical tips to help Australians work out what’s right for them at the end of their lives.

The more prepared our loved ones are for death, the easier it will be on those left behind.
The more prepared our loved ones are for death, the easier it will be on those left behind.

2. My loved one is declining – how do I notify the family?

Learning that you or a loved one has a life-threatening or terminal illness can be the hardest thing to accept. And sharing that news with the people you love can be some of the most difficult conversations of your life. You may want to protect them from the harsh reality, but your family and friends deserve to know. Sometimes the person with the terminal illness may also find a sense of relief in telling others about their diagnosis.

There’s no single, correct way to share the news.

You may worry about how loved ones will feel and want to protect them from the harsh truth. But your family and closest friends deserve to know. Below are some suggested ways you can do this:

You might like to hold a family meeting to explain the news, or alternatively you might prefer to meet with family members and friends individually to talk about your condition.

If you need the support, you can ask a doctor, nurse, or social worker to talk to your family for you, or to be with you when you tell your loved ones.

You might have a long list of people who should be notified, but doing this yourself can be emotionally tiring. You might want to ask a trusted family member or friend to spread the word among your loved ones. You might even suggest they ask the recipients to notify a small group of people and ask them to pass on the message to others on their behalf, to ease the burden.

Everyone deals with bad news and grief differently, so you can’t predict how people will react. Some may cry; others may become numb; and some may channel their emotions into being the ‘go-to helper’ person. Some people may ask what they can do to help, so if you know what that is, let them know.

If you’re not sure how to tell people about someone’s terminal illness – or even death – you might benefit from speaking with a health professional or calling Lifeline on 13 11 14.

3. Coping with anticipatory grief

Anticipatory grief is what people can experience when they know a loss is coming. Not everyone experiences anticipatory grief and it can manifest in different ways – people facing a loss may be angry, impatient or in denial. They may, perhaps, struggle with the realisation that the impending loss is not something that they can control.

This can be a really difficult time to navigate and it might be a good time to seek help from an experienced psychologist, counsellor or service like Lifeline. They can help support you through the process of anticipatory grief and bereavement.

4. What’s the difference between end-of-life care and palliative care?

It’s important to understand the difference between end-of-life care and palliative care.

End-of-life care refers to the healthcare of a person with a terminal condition that has become incurable or advanced. It is the type of support available to terminally ill patients when they find themselves at the final stage of life, through being offered services, information, advice, referral and guidance.

End-of-life care prepares a terminally-ill patient for their imminent passing within days, while palliative care generally lasts much longer – it can even go on for a number of years.

When a patient is suffering a life-limiting illness like cancer that is not curable, with no treatment options available, palliation provides relief of symptoms and suffering. Palliative care is just one aspect of end-of-life care, to help a patient feel more comfortable and improve their quality of life. This care may be more sporadic and less easily contained in a strict time-frame.

Even for aged care or palliative care workers, it can often be difficult to know how to talk about death with people facing their end of their life.
Even for aged care or palliative care workers, it can often be difficult to know how to talk about death with people facing the end of their life.

5. End-of-life planning: Practical tips for preparing for a loved one’s death

Death is not the easiest subject to talk about. No one likes to think about life without their loved ones, much less plan for it. Even so, planning for life after death can help alleviate some of the inevitable pain of losing someone close to you. Through careful planning and care, you can ensure that your end-of-life wishes take place as you envisioned.

With more conversation comes better support for people nearing the end of life, and also for their loved ones. If you can tell your family what you want, it might help to reduce arguments and stress later on, at an already difficult time.

End-of-life care planning is a difficult subject to bring up with friends and family, but it is important that terminally ill patients make their wishes known.

Some of the questions a patient might want to consider include:

  • Where would you prefer to pass away? – at home, hospice care, or hospital?;
  • What are your ‘goals of care’? – developed with your treating doctor or general practitioner;
  • Who do you want with you when you die?
  • What do you want included in an advance care plan or directive? For example: instructions about artificial nutrition, artificial respiration, and who your substitute decision-maker is if you are unable to speak for yourself.

Making an advance care directive

A living will, which is also called an advance care directive, health direction or similar, is a measure to protect you in the event that you can’t make decisions for yourself later on.

A living will can contain all your needs, values and preferences for your future care and details of a substitute decision-maker. When correctly prepared and executed, this legal document will take precedence over other estate documents. You can find out more about how to make an advance care plan or directive in our article: What is a living will and how to make one?

You might even like to consider engaging with a death doula. You can learn more about them in our article: What is a death doula? Non-medical end of life carers explained.

Once you have prepared an end-of-life plan and documents like a Will, advance care directive or living will, it’s important to let a trusted person know where they can find and access these if you were not around.

There’s no single, correct way to share the news about terminal illness or death.
There’s no single, correct way to share the news about terminal illness or death, but it must be done.

How to book a funeral service

Planning your own funeral can be difficult, but it will be even harder for your family after you are gone. Prearranging your funeral is one of the best things you can do for your family during one of the most difficult periods in their lives.

You might want to start by thinking about the type of service you would like. A cremation or burial? Religious, or non-religious? Traditional or non-traditional? If cremation is preferable, what you would like done with your ashes and what sort of memorial would you like?

Once you have an idea of the type of funeral you would like, you might want to consider your preference of provider. You might even like to take care of the financial side of things with money set aside in a savings account, or organising a prepaid funeral.

Bare Cremation offers a simple, direct cremation, that can be prepaid in advance. Arranging a cremation service that is separate from any funeral or memorial allows families to create a meaningful and personalised tribute to a loved one without spending a fortune. Find out more at Bare Cremation website or call 1800 531 672.

After someone passes, their next of kin or executor will need to contact their preferred funeral provider to make arrangements. If the person passes away at home, their death needs to be verified before any funeral provider can take them into their care. If death was expected, the deceased’s doctor or palliative care nurse will need to be called to verify the passing.

However, if the death happened at a hospital or nursing home, generally the staff will call the chosen funeral director on the family’s behalf and liaise with them to organise the transfer. If they are in a larger hospital with a mortuary, the deceased can remain there until the family makes a decision on who to call and arrangements have been made for collection.

What happens to the Will?

A Will is a legally binding document that explains how you wish for your estate to be distributed when you die. If the deceased has not left a Will, the estate is shared under a formula set by law.

After someone passes away, the estate executor, administrator, or Next of Kin will need to notify the bank or financial institution and provide some paperwork.

Once the bank has received everything they need, the estate will be settled and the money and assets will be released to the relevant beneficiaries in accordance with the Will. A stop will also be placed on the accounts so that direct debits and recurring payments will end.

Who pays for everything when someone dies?

If there is no prepaid funeral plan, a funeral can generally be paid from a deceased person’s estate. The bank can release funds from the to the executor or administrator acting for the estate, to pay for funeral costs while the account is frozen. To find out more read our article: What can be paid out of a deceased estate account?

What happens when you’re not prepared for death?

Talking about death will help those in your care prepare well, to relieve the decision-making burden on those closest to them.

Terminally ill patients who do not talk about dying are less informed about their rights for when they pass away. This often places the burden on the unprepared family members who left to make those difficult arrangements while they are coming to terms with their grief.

Encouraging patients to have a conversation with their loved ones about their end-of-life wishes will help them achieve a comfortable passing.

Terminally ill patients may even become so unwell that they can no longer communicate. If that happens, medical staff, carers and family may need to make decisions on their behalf. But patients who give instructions to their loved ones to help them make these decisions on their behalf will help them achieve a more peaceful passing.

How to talk about end-of-life planning

Here are some conversation starters you might like to suggest to a person in your care, to assist them in broaching the subject of end-of-life care with their family. Alternatively, these can easily be modified for a family member to start the conversation with their loved one:

  • “I’ve spoken to [my partner] about what I would like to happen if I get really sick and I would like you to support them by [whatever the directives are].”
  • “I’ve made an advanced care plan to make things easier later on, I’d like you to take a look at it so you understand what I would like.”
  • “Now that I’ve moved into a retirement home/aged care/palliative care, I have put my affairs in order and I’d like to show you where everything is.”
  • “I want to make the process as easy for you when I pass. So when it comes to planning my funeral I would like a [burial/cremation], with [particular music] and [any other service details].”
  • Acknowledging the passing of someone else recently, “I really hope that [insert person] received the care the way they wanted to when they were dying. I’ve been thinking about the kind of care I would want…”
  • “Now that I have been diagnosed with [insert condition], I want to make sure that you know my wishes for care. Can we talk about this?”
  • “I have just updated my Will. They asked me to think about who should make decisions about my care if I weren’t able to do so. I wanted to ask if you would do that? Maybe we should talk about how I would like to be cared for so that it would be easier for you to make those decisions.”

 

It’s important to understand that these conversations are going to be very difficult, so there’s no need to cover everything in a single conversation. Perhaps begin by talking about some information you have read about healthcare, or reference someone who has died recently that has been in the media. Then relate this to yourself for example: “I just read an article about [e.g. David Bowie] passing. It said he had his family with him when he died. When I die I hope that when I pass…”

Palliative Care Australia’s Dying to Talk Discussion Starter is a great resource to assist patients and their families to make a plan.

It’s sad to talk about what comes next after a terminal diagnosis, or when a loved one or patient enters palliative care. But the better prepared, the easier it will be on those left behind.

We hope this article has provided some practical tips on encouraging end-of-life discussions. Below are some more resources that might help with talking about death.

6. End-of-life resources

 

More of our grief and end-of-life resources are available on the Bare Cremation website, including our articles: What is a death doula? Non-medical end of life carers explained and ‘Death positivity’: Why lifting the taboo on dying is vital for life.

Bereavement resources

 

All information provided is general in nature. For additional information relating to advance care planning, please speak to your health professional for advice about your specific circumstances, including the legislative requirements in your state or territory.

Want to see what our direct cremation service will cost in your area?To get a free quote for a cremation visit the Bare Cremation website, or call 1800 531 672.

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