We all agree that a ‘good death’ is important. Yet we probably all put far more time into planning our next holiday than we put into planning meaningful end-of-life care for ourselves or our loved ones.
Maybe that’s because it’s an upsetting topic. And maybe it’s because we really don’t know how to go about it.
How do you begin that conversation?
When’s the right time?
Why does it matter so much anyway?
The importance of knowing someone’s wishes for end-of-life care
A ‘good death’ means something different to each one of us, depending on our health needs, family situation and religious beliefs. Most people say they prefer to die at home in familiar surroundings. When they know their time is now short, they prefer to spend it with the people they love. They want care that eases their physical pain, comforts them in their emotional distress and nourishes their spiritual outlook.
But people don’t always get a ‘good death’. Our healthcare system is geared to keeping people alive. That’s why paramedics and doctors fight hard to restart a heartbeat and get oxygen into a patient’s lungs.
Yet there comes a time when treatment may be prolonging death rather than prolonging life. Medical interventions like ventilation (artificial breathing) or CPR to restart a heart may sometimes be able to keep a person going for a few more days or weeks. But, given a choice, they may not have wished to spend their final moments in hospital hooked up to machinery, recovering from painful broken ribs due to CPR.
That’s very distressing for families too. Gathered around the bedside of an unresponsive parent on a ventilator, they’re faced with making end-of-life decisions. Should aggressive treatments continue or be withdrawn, making the patient comfortable but allowing natural death to occur?
What would the patient want? Who knows? Some families are in agreement about next steps. Others must now navigate disagreements that add to their distress.
This is why it is important to know your loved one’s wishes for end-of-life care. It’s an important conversation to have. And it can be a very beautiful, meaningful conversation that gives people the opportunity to talk about what they value, decide who to trust as a substitute decision maker, and plan how to spend their final days. They are then more likely to experience ‘a good death’ on their terms, which is a great comfort to families.
When should you start talking about end-of-life care?
Your loved one may be frail, elderly and prone to confusion – you’re aware that their health could change very quickly if they had a bad fall, for example, and sustained a head injury that meant they couldn’t make their own decisions about care.
Your loved one may be in the late stages of a terminal illness. Treatments are no longer working and the focus has shifted to keeping them comfortable. What matters most to them in this final stage of life? How do they want to spend their time? What sort of care do they want (and not want)?
Your loved one may have recently been diagnosed with dementia. At the moment, they’re still capable of making informed decisions about their treatment but you know that there will come a time when you have to decide for them. Do you know what they would want?
In each of these situations (and many others), family members need to know what sort of end-of-life care their loved one would want. Then the official paperwork needs to be done to support those decisions, directing doctors and families to act in accordance with the patient’s stated wishes. The patient should also appoint a substitute decision maker to decide on unanticipated scenarios in accordance with the patient’s values.
So, how do you begin that conversation? And what do you need to talk about exactly?
How to talk to your loved one about their wishes
You’re probably never going to feel ready for this conversation so may need to accept your discomfort and have the talk. It may not be as awkward or upsetting as you think. Sometimes these conversations are like a breath of fresh air, the opportunity you’ve all been waiting for to talk about something that really matters to you all.
1. Choose the right moment
Don’t spring this conversation on someone or try to slot it into a busy day. It may be best to raise the need for a talk, then set aside some time for it together. Aim for a time of day when you and your loved one are most likely to be feeling refreshed and set a relaxed tone by talking over a cuppa.
2. Talk about what a good death means to them
Your role is to listen, ask questions, seek to understand. You can help someone clarify their thoughts by asking questions that take the discussion deeper.
A paper called ‘The physicians guide to talking about end-of-life care’ written by a doctor at Harvard University recommends asking questions such as:
- You said that you don’t want to suffer – what type of suffering are you talking about?
- You said that you don’t want to be a burden – what do you mean by that?
- You said that you don’t want to be kept alive as a vegetable – what does that mean to you?
3. Be clear about the medical prognosis
Hard as it is, it’s important for you all to recognise and accept what the doctors are saying about your loved one’s prognosis. There may be a mix of facts and uncertainties about how their disease may progress.
At the very least, you know that you’ve reached a point where it’s helpful to discuss their wishes for end-of-life care. As their condition worsens over time, you may need to revisit this discussion a few times, asking questions like:
- You’re now very ill. Are your thoughts about the kind of care you want the same as they were when we last talked or have they changed in some way?
- Do you want to keep fighting or would you prefer that the doctors keep you comfortable and let things happen naturally?
4. Talk about more than CPR
End-of-life care involves so much more than answering Yes/No to ‘Do you want to be resuscitated?’
As the Harvard paper notes,
End-of-life discussions, however, must go beyond the narrow focus of resuscitation. Instead, such discussions should address the broad array of concerns shared by most dying patients and families: fears about dying, understanding prognosis, achieving important end-of-life goals, and attending to physical needs.
Identifying fears, goals, needs and wishes helps to ease a patient’s anguish. It also enables doctors to plan care with those things in mind.
Let’s imagine a patient says that the most important thing to them in their final days is being at home and seeing their grandchildren. The family can ensure the grandkids are present. The doctors can ensure that registered nurses visit the patient at home to provide pain relief or other care.
Another patient may prefer to be in a hospice when the end draws near.
5. But do understand the realities of CPR
CPR stands for cardiopulmonary resuscitation. It means that, when a patient’s heart stops beating, paramedics or doctors would use electric shocks and chest compressions to try to get it going again. If a patient stopped breathing, the healthcare team would put a tube into their lungs connected to a ventilator, meaning they could no longer speak.
CPR performed on someone who is already frail or seriously ill is rarely successful. The patient may die despite resuscitation attempts. They may gain a few more days of life, spent entirely on a ventilator and dealing with the pain of cracked ribs while the family decides whether or not to turn the machines off.
If your loved one does not want these treatments and would prefer to let natural death occur, then they can sign a Do Not Resuscitate order, known as a DNR.
6. Formalise the advanced care plan
It’s great that your family has now talked with your loved one about their preferences for end-of-life care. Now it’s time to make those wishes official in the form of an advanced care plan.
An advanced care plan is an official document where your loved one:
- Explains what’s important to them
- Expresses their wishes for end-of-life care, including (but not limited to) whether or not they want CPR
- Nominates one or more substitute decision makers to act on their behalf if they can no longer speak for themselves.
So, how do you get an advanced care plan? Aged care facilities or hospitals may help you develop one (though these are often in paper form and can get lost). Alternatively, you can create a digital advanced care plan, such as those offered by Touchstone Life Care available to everyone (including family members) by QR code.
How can Focused Health Care help?
Led by Registered Nurses, we provide high-quality, compassionate in-home care, including palliative care.
Palliative care helps people to experience a better quality of life during their final 6-12 months. Focused Health Care’s palliative care nurses can help your loved one manage pain and end-of-life symptoms, provide personal care, support your family and provide emotional, spiritual and psychological support.
We can also work with your loved one to help them develop an advanced care plan so that they die a ‘good death’ that’s in keeping with their wishes.
If you’d like to learn more, please contact us.
All information is general in nature. Patients should consider their own personal circumstances and seek a second opinion.