I first learn about J at handover. The story sounds harrowing. They’ve been admitted with a serious fracture, and while investigating the fracture found to have a probable cancer, with lesions in several places. Now J is delirious, in pain and distressed waiting for surgery. Restless and distressed, J is in no position to tell us what would be important to them, knowing this new information. We provide symptom relief and manage acute issues. J is comfortable for now but facing major surgery and more.

 

I meet with J’s adult children. Knowing that J could deteriorate at any time, there are some discussions about her medical care that we must have. I am anxious and uncertain, “How will the discussion go?” But I am also filled with a sense that this is an important opportunity to understand as much as I can about J for their future care, this is the calm before the storm. I know I will use all the skills I have to guide the discussion and help her family bring forward the most important things in her life knowing, her time will be shorter than hoped for.

 

At the beginning of the conversation her children tell me “We only want to think about surgery nothing more” and sound resolute. Through careful exploration and support, by the end we have discussed multiple possible outcomes including  clarifying goals of care and discussing potential palliative care for the likely new cancer. As sad as these new concepts are, they thank me for the chance to ask all the questions they need at this time. I feel reassured that having this conversation at this time is the right thing for J’s future care.

 

Fears

 

What’s the real challenge with talking about death as a possible outcome?  Is it saying the words, or is it feeling able to manage the response, the inevitable emotions that arise, the expressions of sadness and pain. I suspect it is the latter. I’m not writing  to convince you that these conversations are not challenging all round.

 

I will say that there are things we can think about, say and do to help us feel more ready for these conversations, and to give better support.

 

In this article I will explore some common concerns and  consider ways to approach them to provide the best care for our patients, their loved ones and ourselves.

 

“What do I say?” Responding to emotions

 

What do we say in the face of other’s emotions? It is worth considering that in the face of conversations about life and death there are no perfect words. What can be more helpful  is our intent to support, to be with, to show empathy, compassion, and  to understand. Sometimes there are no words and supportive silence is what is needed. An often-used guide for providing support is the NURSE acronym, this describes different responses or actions to provide support for difficult emotions. The idea is not to use these sequentially but to choose different response in order to recognise and support the person with their emotions.

 

Here are some examples of NURSE responses

 

Table 1 NURSE  for responding to emotion (1)

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“Am I right the person to do this?” Feeling out of our depth

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Someone asks you about death, dying, prognosis and you freeze. Surely, I can’t be the right person to talk about this? You may not have all the answers, but your power lies in recognising and acknowledging the needs of person in front of you and getting help if needed.

 

Everyone can be the right person to show kindness, respect, empathy, and  get help. Even recognising someone is in need and alerting a team member that can help people feel seen and valued for their unique needs

 

Possible responses

“I can see this is really important to you”

“Thanks for sharing this with me (these are hard things to think about)”

“I am not sure of (the answer) but let me try and find out / find  someone who can help and get back to you”

 

“I can’t fix this”

 

As healthcare professionals so much of our training is focussed on cure and resolving issues and much less time dedicated to how to support for those illnesses that are not going to get better. This might bring up feelings of helplessness, anxiety may even lead us to avoid the topic altogether. A reframe or another way to look at this challenge,  is to recognise that we are uniquely placed to support people through their hardest times in the kindest way.  We can explain what is happening, demystify the changes they are seeing, relieve symptoms and support communication with the wider family. Whilst we may not be able to slow the declining health, we can help focus on what important goals still remain and try to achieve this as best we can together. 

 

Possible approaches

“I wish this wasn’t the case / wish we had better news for you.”

"…Given what we know now what things would be important to you going forward”

 

Values statements

These questions can help you identify and map values, goals and things the person would want to avoid.  This can then help guide the advice that you or your team may give regarding suitable support or treatments to help achieve these goals.

 

Mapping Values (2)

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Adapted from Vitaltalk REMAP

 

Helping yourself

 

Allow your feelings to be present

 

Talking about death and dying is one of the hardest parts of our job and yet can feel like a daily occurrence. Acknowledging our feelings (affect labelling) can help them feel less overwhelming. Sharing can also help you feel less alone

 

Allow yourself to accept help

 

Some patients’ and families’ situations may touch you in a special way, due to the particular situation, or things you may have in common or due to your own experiences. If this is weighing on your mind speak to someone you trust, use available counselling or debrief  services, or talk to your GP.

 

Find your reasons, those that motivate you for difficult discussions

 

These discussions are vital and studies show that people with life-limiting illnesses want their healthcare providers to be the ones to initiate these  in a  clear and supportive way.(3) Can you reframe the conversation from one of dread, to one that gives a vital opportunity for your patient to make their wishes known ahead of time, so that these wishes can be central in planning their future care?

 

Some people may not be ready to have a conversation about plans if their health worsens, however even those who are not ready can be open to some kind of conversation, and it doesn’t have to happen all at once. Time may be short but there are ways of finding out what’s important.

 

Helping others

 

If something challenging is brought up don’t panic, always seek to find out more about why this matters, and why now. Practice saying, “This sounds important to you can you tell me more about what … means to you” Also practice active listening and focussing your attention on your patient’s messages.

 

Listening is a complex skill. Letting people know you are listening is also vital for building trust, this is where those signs of active listening (nodding, leaning forward, mirroring statements) are helpful. The outward appearance of active listening is only one part of what it means to truly listen.

 

To listen well, we need to also be aware of our internal narratives and still able to focus on our conversation partner. This doesn’t mean suppressing or burying your thoughts and feelings, instead we  maintain an awareness of these, while choosing to centre and understand our patient’s experience.  Practice this kind of  listening day-to-day – it will make it easier in the more challenging situations.

 

These skills are as essential when supporting your colleagues as they are with patients and families. When concerns arise start by listening deeply. Consider asking “What do you need from me in this moment?” or “How can I support you best right now?”

 

Recognise your power

 

The word “power” can arouse suspicion, due to fears about how it can be misused. If you feel more comfortable you consider this as “resourcefulness” i.e. what resources are available to you to help your patients and their families. It’s important that as doctors recognise we do have expertise and experience, and we can use these in many different ways to benefit those in our care.

 

Using your power or resources might look like

 

• Choosing not to avoid the difficult questions

• Inviting people towards difficult topics

  • Normalising these questions “some people worry about… is this something you have thought about?” “Would you like to know more?”

• Giving information to the best of our ability

• Seeking out further information from your resources (specialists, other services such as palliative care)

• Providing access to additional supports

• Thinking ahead about what care and treatment may help (or what treatments are unlikely to help not), discussing these honestly and planning ahead.

• Holding space for uncertainty

 

Cultural considerations

 

When the person you are speaking with appears to come from a different cultural background to yourself.

 

This one is often raised as a challenge and is accompanied  with biases and expectations on many sides. Some cultures are more prevalent, but no culture is the “gold standard” and recognising our own culture as one of many is a step towards intentionally learning about other cultures. There are specific resources to support cultural safety for different groups, some are available at the end of this article.

 

It is not infrequent to hear phrases such as “they don’t understand, its cultural” or “they have poor insight” when on further exploration it becomes clear we haven’t really tried to find out the reasons behind the person’s decisions. Maybe it is us who lack insight into the many different attitudes to approaching end of life.

 

Two rules I live by  are respect and curiosity. These  two go hand in hand. Respect without curiosity may lead us  to avoiding the difficult but necessary topics, or making assumptions about people’s views. Curiosity without respect risks  becoming intrusive, voyeuristic and demeaning, again playing into stereotypes. It is vital to use these two principles together because to help those you are caring for  you will need to understand what is important to them, and why.

 

Be aware that those you are caring for may have had variable experiences with health care professionals and some experiences may have been negative. You can build trust by focussing on understanding their experiences and needs, instead of  making assumptions about what they may need. Also, it is worth noting that the concept of “a good death” may mean different things to different people.

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Their questions might include:

• Access to spiritual or faith-based support

• Ability to be cared for at home while dying

• Have all options really been tried?

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To understand more, you might ask

“Knowing what we know about your/their illness, some people have specific needs around their faith or culture when coming to the end of their life – is that something you have thought about?”

“Are their things that are really important for us to do or not do, knowing time may be short?”

 

If you notice cultural artefacts at the bedside – respectfully ask about these, it is another way into a conversation about what is important.

 

 

Making room for joy

 

It may sound strange, but even in the worst of times there may  be a fond memory or a light-hearted comment. Follow the lead of the person or people you are talking with, those seemingly incongruent comments are a bid for connection a reminder, that we are all human and can feel a multitude of things at once. Consider asking:

 

“This is a really difficult time, at times like this (or at this time) what gives you strength? What lifts your mood?”

 

 

Conclusion

 

These are just some reflections on what we can do to help those we care for as well as support ourselves and our colleagues with these vital and sensitive conversations.

 

One final comment, you don’t have to learn about these conversations alone. Talk about them and  learn from them. Seek out chances to practice in supportive environments (such as communication simulation) and receive feedback. Watch others have these conversations when you have the opportunity. Debrief about the ones that bring up feelings for you.

 

Learning a range of communication skills to support your patients will make a positive difference to their care. Having these discussions at the right time enables our patients and their families to receive the best care at the most difficult  times.

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References 

1. Back AL, Arnold RM, Baile WF, Tulsky JA, Fryer-Edwards K. Approaching difficult communication tasks in oncology. CA Cancer J Clin 2005;55(3):164–177.

2. Childers JW. Back AL, Tulsky, JA., & Arnold RM. (2017). REMAP: A Framework for Goals of Care Conversations. Journal of oncology practice, 13(10), e844–e850.

3. Bernacki RE., Block SD., & American College of Physicians High Value Care Task Force (2014). Communication about serious illness care goals: a review and synthesis of best practices. JAMA internal medicine, 174(12), 1994–2003.

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For more information and resources see below.

 

Program of Experience in Palliative Care Approach (PEPA and iPEPA)

https://pepaeducation.com/pepa/pepa-resources/

Self-directed resources and access to courses, including an online communication guide

 

Serious Illness Conversation guide

https://www.ariadnelabs.org/wp-content/uploads/2023/05/Serious-Illness-Conversation-Guide.2023-05-18.pdf

Patient tested conversation guide for discussing serious illness, identifying goals and making a plan.

 

EOLEssentials communication education module

https://education.endoflifeessentials.com.au/browse-courses

Online course – requires login (free)

 

palliAGED (Palliative Care Aged Care Evidence)

https://www.palliaged.com.au/Improving-Care/Communication/Talking-About-End-of-Life

Tips on talking about end of life

 

Vitaltalk

https://www.vitaltalk.org/

Courses, resources and an app filled with tips to support communication

 

Childers, J. W., Bulls, H., & Arnold, R. (2023). Beyond the NURSE Acronym: The Functions of Empathy in Serious Illness Conversations. Journal of pain and symptom management, 65(4), e375–e379.

Article exploring the role of empathy in goals of care discussions