When caring for someone who is approaching the last stages of life, through a life-limiting illness or frailty, it can often be easier to stay in a state of hopeful positivity; to believe that the person will get better or live longer. Doing so, however, avoids the painful truth. This might seem like the easier option initially, but it prevents people from preparing – both in practical and emotional ways – for the declining health and eventual death of the person. Our long history of supporting caregivers tells us that when people are gently guided to accept this reality, they can be better prepared, informed and supported through the experience.
There are many doctors and other health professionals who are highly skilled in, and very supportive when, helping patients and families understand that a disease can no longer be treated or that death is imminent. In these situations, patients and families can be referred to palliative and hospice services that provide effective care and support.
Sometimes, particularly in an acute hospital setting, some medical practitioners stay focused on curing the disease instead of clearly and honestly explaining that it is no longer treatable and then referring the patient to palliative care, which will help relieve the person of discomfort, distress or pain as their illness progresses. These conversations are hard for everyone, including medical and other clinical staff.
Over the years, dying and death have become increasingly medicalised, institutionalised and removed from the home, where most sick and ageing people were once cared for by their families. It is now largely hidden from view (in hospitals and mortuaries), so we don’t know what to expect and are unprepared when the end does come. Because of this, we often don’t talk about it and tend to be frightened and anxious – even in denial – about it.
There are many reasons why people find this ‘taboo’ topic so difficult to discuss. There may be a fear that: you won’t know how to start the conversation; you or the person you’re caring for will cry; it will upset other family or friends; talking about it might somehow make it happen; it will raise uncomfortable issues about spirituality and religion; or your loved one will feel that you have given up all hope.
While concerns such as these can prevent or delay discussions about the last stages of life, keep in mind that talking to the person you’re caring for about what’s important to them now can help you fulfil their final hopes and wishes over the coming months and weeks. Understanding what happens as the end approaches can also lessen any fear and uncertainty you may be feeling. Ultimately, talking about and preparing for this inevitable outcome can make you better able to care for the person.
What happens when we talk about the last stages of life?
Whether sudden or expected, death affects not just the person facing it but also their family, friends and the people who care for them. Reducing the silence and stigma around it can have profound benefits for all. It also has the power to change the experience in our society so that more people can choose where they want to die, supported by good care and surrounded by the people they love. Open, honest conversations in the last stages of life can:
- Encourage rich and valuable discussions about what really matters in life and deepen your relationships
- Help overcome the fear, reluctance or uncertainty you may be feeling about caring for someone who has a life-limiting illness
- Allow you and your family to focus on making the most of the time you have left together
- Keep you better informed, giving you and the person you are caring for greater choice and control in the last stages
- Enable you to plan and prepare, aided by information and support that can lead to decisions, outcomes and experiences that are consistent with the wishes of your loved one
How do you start talking about the last stages of life?
It begins with a simple conversation defined by openness and honesty, sensitivity and respect. And only when people are ready – if you watch and listen carefully, they may give you cues (a subtle hint, a look, an indirect question). They might surprise you and want desperately to talk about it. Or perhaps you, the person you’re caring for or some family members are still in shock about the prognosis and do not yet feel able to broach the subject – this is okay, too, and may happen in time. It’s also possible that they may never be ready to discuss it. If this is the case, there is always someone you can talk to; your GP, a close friend or a Violet guide, for instance.
If you’ve thought about some of the things you want or feel you need to talk about, and you have someone in mind that you would like to talk to, the next step is to make the time to have this important conversation. These conversations don’t need to be deep or confronting – sometimes it’s easier to talk about more practical, less emotional, issues first. You may want to make sure that you know how your loved one wants to be cared for over the coming months and weeks, discuss legal documents (will, advanced care directive, power of attorney, etc.) or ask if they’ve thought about funeral arrangements and how they’d like to be remembered. One way to start the conversation might be talking about your feelings for the person you are caring for, the things you are grateful for or the life experiences you have both shared.
Hopefully, this will be the first of many conversations and each one will get easier as you become more comfortable with this inevitable part of living. Try not to be afraid or embarrassed by your emotions – rather, acknowledge that you are finding it hard to talk but really want to. This is a challenging situation for all of you, but it is important to make the time to discuss it before it’s too late. You may want to talk it over with someone you trust (a close friend or spiritual counsellor) before you raise it with the person you’re caring for and you may want to keep speaking with them as the person moves closer and closer to the end.
If you are talking with the person who is in the last stages of life, both of you may get emotional; although that can feel distressing, try to keep going even if you need to take a break or get some tissues and a glass of water. It may be best to have several short conversations, talking about one thing at a time. Pick a place where you are both comfortable and a time when you are both well rested. Consider asking a trusted family member or friend to be close by in case you need extra support.
Here are some suggestions for starting a conversation with the person you’re caring for or someone else affected by the situation:
- I think it would be good for us to talk about what is happening…
- Things don’t appear to be going very well at the moment…
- What do you think is happening now?
- No-one seems to want to talk about what is happening…
- I don’t want to make us cry, but I’m scared about what’s ahead…
- I know the prognosis is hard to accept, but I would like to try somehow…
- It feels like we’re running out of time and I’d like to talk about things before it’s too late…
- Is there anyone you would like to talk to about this or get in touch with?
- The doctor seemed to be saying that the treatment isn’t working. What do you think that means?
- I’m worried that you are very sick and we haven’t ever really talked about what you want to do with regards to…
- I would really like to make the most of the time we have left together. Is that how you feel?
Some of your questions will need to be asked of medical or other professionals who are caring for the person dying. Make a list of these or ask for information to be repeated or written down – remember that no question is wrong, inappropriate or silly. Try to be as clear and direct as possible when communicating. For example:
- “Could you explain exactly what is happening…”
- “Are there any other treatments you’d try?”
- “Is he/she in the last stages of life?”
- “What care can we provide to make them as comfortable as possible?”
Research shows that patients and their families often do not accurately recall the information given to them in a clinical consultation where there is a difficult diagnosis or prognosis. It could be useful to record the conversation on a mobile device (with the permission of the clinician) so that you can listen to it again later, or invite a friend along who can take notes while you focus on the discussion.
Who should you talk to?
While it’s not easy, speaking honestly about the last stages of life is the first step in coming to terms with it and could alleviate some of the difficulties you face while caring. People you can talk to and turn to for support include:
- The person you are caring for
- Your partner, husband or wife
- Your parents, children, brothers, sisters or other family members and relatives
- Health professionals such as your GP, specialists, community nurse or palliative care service
- Close friends
- Work colleagues
- Spiritual or religious figures
- Psychologist or other counsellors
- Violet guide