Despite its inevitability, most people choose not to think about death until the time comes to face it head on, and would prefer to bow out of this life unexpectedly to avoid the pain of knowing they were dying. Today however, life-limiting illness is gradually replacing unexpected and sudden death as the 'norm', and in its place has come a process which starts at terminal illness diagnosis, moves through a period of treatment, and ends eventually in death.
Once diagnosed, individuals with a terminal illness are left to contemplate their approaching death during what will undoubtedly be a devastating and life changing time. However, with the right tools and support, they can determine to make it a better experience not just for themselves, but also for the loved ones they will leave behind.
This fact-sheet hopes to provide information and support that will help those with a terminal illness and their loved ones to consider their own mortality, talk openly about death, and explore the issues facing them so that they can live out their personal journey in a way with which they feel comfortable.
Hearing the news
Hearing that you have an illness that can’t be cured can be frightening – especially as you may not have previously given much thought to how or when you will die.
There is no ‘stock’ response to hearing this news and there is no right or wrong way to react.
At first you may feel numb and unable to digest what you’ve just heard, but as time passes it’s likely that you’ll experience a range of different emotions. You may feel:
- shocked about the diagnosis
- fearful of dying
- resentful and angry over the unjustness of the situation
- in denial about what’s happening
- helpless because you cannot control what’s going on
- relief and perhaps eventually, acceptance, as you come to terms and make peace with the situation.
However you feel, you don’t have to go through any of this on your own. If you were by yourself when you heard the news, ask if you can return with a friend or family member so they can hear everything the doctor has to say. Even if you’re feeling isolated and alone, having someone there with you will provide comfort and support on an emotional and practical level.
Also be sure to ask your doctor what support services are available. You might be referred to a palliative care team who provide end of life care for those living with a life-limiting illness, or they may suggest additional avenues of support such as terminal illness counselling and local support groups.
In addition, your doctor should also be able to advise on whether you may be eligible for financial support – which could help to relieve any anxiety you feel about how you will support yourself financially.
Telling people about your illness
Often, saying something out loud makes it feel more tangible – which is perhaps why many of us choose to lock up certain thoughts and feelings until we are ready to confront them.
Speaking openly about the fact you are dying will naturally be difficult. It may be painful for both yourself and your loved ones at first, and will almost certainly challenge you to confront questions and actualities that you may not feel prepared or able to answer.
The antithesis of this however, is that talking honestly with those to whom you are closest can help to lessen any feelings of isolation you may have, and you may find that it comes as a relief to have the subject out in the open.
Talking about your illness may be tough, but ultimately you may find that the experience cements important bonds and helps you feel more able to deal with the future and your anxieties together.
Telling your friends and family
From your thoughts and fears about death through to wishes for end of life care, funeral arrangements or things you would like to give people – there are a number of things you might wish to talk about with those closest to you.
Starting the conversation can be the most difficult part, and even though it’s unavoidable, you may find that friends and family will try to avoid it for as long as possible. Below, find some advice on how to start and carry the conversation:
- Choose the right time - Choose a time when you know you won’t be interrupted. Friends and family may have questions for you so it’s important that they don’t feel rushed.
- Choose the right place - Pick a location that is private and where you know you won’t be disturbed – this will help all parties to feel more relaxed.
- Ask questions - Opening with a question may help as it gives loved ones an opportunity to express how they are feeling. For example: “I know it will be hard but do you think we should speak about what’s going to happen?”
- Listen - Listen carefully to what they have to say, and if they change the subject and tell you they don’t wish to discuss it, try saying something like: “OK that’s fine, but I do hope we can talk about it another time as this is something that would really help me”.
It’s natural for people to become emotional when they talk about someone they love dying. However, try not to let this deter you. An outward display of emotion can act as a release from pressures and worries, and once this initial pressure is released it may help all involved to discuss things more openly.
Whether you are living with a life-limiting illness yourself, or you are trying to support a loved one, the situation will inevitably leave you with a sense of uncertainty about what is to come.
While nobody can provide the answers or make the process easier, there are various tools and support avenues that may offer comfort and a level of relief during this time:
Joining a support group could be beneficial for all parties as there is something cathartic about speaking with others who are in a similar place to us. This could help if you’re feeling alone and confused, and it might also help friends and family to meet and share experiences with others who are supporting their loved ones through this difficult time.
Online support forums and groups
In a similar vein to support groups, there is a huge array of online forums and sites that allow individuals to share their experiences via the Internet. Online support is ideal for those who can’t access conventional support groups, and has the additional benefit of anonymity for those who aren’t quite ready to discuss their feelings with family and friends.
Many charities provide web forums, online chat services, email contact and phone lines.
Friends and family
It goes without saying that family and friends will wish to help in any way possible. However, at first, both parties may find it difficult to speak openly about their feelings and it may take time for this to happen naturally.
If you don’t feel ready to speak about how you feel, remember there are other ways to ask for or show support. Practical care such as doing the grocery shopping, delivering meals for the freezer or providing lifts to an appointment can help friends and family to feel that they are useful and will help you to feel supported.
Complementary and alternative therapies
While holistic therapies should not be viewed as a replacement for traditional medicine, what we are seeing more frequently is that when used in tandem with conventional treatment the benefits can be significant.
Therapies such as acupuncture and aromatherapy are often sought to promote relaxation for example – and in an indirect way can help to alleviate the stress of close family. As a result of the client often feeling more positive after treatment, the carer or relative feels more optimistic and supported.
If you’re not ready to discuss your situation with the ones you love, or if you would prefer to speak with a neutral party so that you are able to vocalise your thoughts in an environment free from judgement, you may benefit from speaking with a counsellor.
Bereavement or grief counselling is designed to help people cope more effectively with the death of a loved one, or in this case, supports the grieving process that occurs in response to an individual’s own terminal illness.
Bereavement counselling can help to:
- offer an understanding of the mourning process and grief stages
- settle any outstanding areas of conflict
- help you to adjust to a new sense of self
- address possible issues of depression.
As mentioned above, a bereavement counsellor may discuss the grief stages with you, which reflect common reactions people have as they try to make sense of their loss.
During bereavement we spend varying lengths of time making our way through each stage of grief, experiencing each one either more or less intensely than the last before eventually achieving a more peaceful acceptance of death.
Understanding grief stages can be beneficial for both those living with a life-limiting illness and for those around them – not as a model for how they should feel, but as a guide to help them to understand and put into context where they are.
The grief stages are as follows (these stages do not always follow on from one another, and some individuals may revisit certain stages before progressing to another):
- Isolation and denial
Often an initial reaction to finding out we are ill, or learning that someone we love is ill, is to deny the reality of the situation. This is a natural defence mechanism that acts as a buffer from the immediate facts and moves us through the first wave of pain.
As denial and isolation dissipate, hurt begins to resurface and often we do not feel ready for it. In response, we redirect how we feel and express it as anger. The anger may be directed at inanimate objects or strangers – but often for friends and family it may be directed at our dying loved one. While rationally we know the person cannot be blamed, emotionally we may feel resentment for the pain they will cause when they leave us.
When we feel helpless and vulnerable a natural reaction is to bargain in an attempt to regain a level of control. We ask questions like ‘What if we were to get a second opinion from another doctor?’ or ‘Why didn’t we seek medical attention sooner?’ We distract ourselves with these questions in the hope of postponing what is to come.
For those living with terminal illness and their family and friends, sadness and regret may begin to dominate feelings, while practical considerations may also be a source of anxiety as worries about funeral costs and financial stability set in.
Reaching this stage does not come easily and does not come for everyone. If the death of loved one was sudden and unexpected, it may take an incredibly long time to start seeing beyond the anger and/or denial. This phase of mourning is generally marked by withdrawal and calm.
If you think you may be depressed
While it is natural to experience emotions such as anger, shock and sadness when you hear that you have a life-limiting illness, if you continue to feel unable to cope with the situation to the point where you are unable to do any of the things you want or need to, it may be time to speak with your doctor who can refer you on to appropriate treatment.
Certain types of medication can often be helpful for the treatment of depression, as can grief counselling.
What should I be looking for in a counsellor or psychotherapist?
There are currently no laws in position that stipulate a required level of training for counsellors offering support in this area. However, the National Institute for Health and Care Excellence (NICE) have put together a report outlining recommendations for palliative care (cancer care in particular):
- All patients should undergo systematic psychological assessment at key points and have access to appropriate psychological support.
- Patients and carers should have access to staff who are sensitive to their spiritual needs and should be appointed spiritual care givers who can act as a resource for patients, carers and staff. They should also be aware of local community resources for spiritual care.
- Families and carers should receive professional support that meets their needs and reflects cultural sensitivities, during the patient’s life and bereavement.
For more information, please see the full NICE report:
A Diploma level qualification in bereavement counselling or a related topic will also provide assurance and peace of mind that your counsellor has developed the necessary skills.
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