Sometimes your illness can come on so quickly and deteriorate so rapidly that you are left with hardly any time to prepare.
Sometimes you think you have lots of time to make plans and then are surprised when things suddenly deteriorate.
If you've not had chance to make plans before, now is the time to try while you still have some energy. Take a look at the section on 'creating a personal portfolio' for more information.
Sadly, no matter how well you try and prepare for death, the last weeks of life can be a frightening time for you and your loved ones especially if you don't know what to expect.
We hope you will find some useful guidance in this part of the website to help you at this very difficult time.
Unfortunately it is very difficult to predict exactly what will happen – your experience is unique to you. The condition you are dying from and any other health problems you have will affect the kind of symptoms you will develop as your condition deteriorates.
For some people there is a sudden, massive deterioration suggesting the last weeks or days of life are here. For others there is a steady almost unnoticeable decline over many months. Sometimes something else happens that can speed up the dying process – for example picking up a chest infection or having a bad fall.
Trying to pin point exactly when someone enters the dying phase of their life can be very difficult. This is why most doctors will be vague when answering questions about how long someone has left to live; counting in terms of days, weeks or months rather than exact time frames.
Some diseases do follow a predictable path and this can help the health care professionals looking after you to give you information about what is to come and to answer your questions.
If there are any websites specific for your diagnosis it may be useful to look at them for more detailed information.
Included here are a few examples:
- People dying from chronic lung disease, lung cancer or heart failure are likely to become more breathless
- People dying from chronic kidney disease may develop swelling and breathlessness or itchy skin and nausea and vomiting
- People dying from liver diseases may become jaundiced (skin turns yellow), develop severe itching and a very swollen tummy
There are some features common to many dying people regardless of their diagnosis. These features can help indicate that a person is in the last few weeks of life:
- Increasing weakness and lethargy
- Spending more time asleep
- Reduced need for food and drink
- Skin changes – skin may swell and develop a doughy texture
- Voice changes – hoarseness or a weak quiet voice
- Swallowing problems
- Weight loss
Don't forget that all these signs can be attributed to something other than dying – they are significant here because they are occurring in someone known to have a severe life threatening illness.
It's easy to concentrate on the physical aspects of dying especially when some of the symptoms you are experiencing can cause a lot of distress. But getting your head around what's happening to you is sometimes the hardest to deal with. It's often the hardest part for your carers and loved ones too.
You may feel like you're on a roller coaster ride with your feelings and changes can occur sometimes from minute to minute.
Here are some examples that may ring true for you:
- Feeling angry
- why is this happening to me?
- It's not fair!
- Why doesn't somebody DO something?
- Why doesn't somebody LISTEN to me?
- Feeling frightened
- Fear of being in pain
- Fear of the unknown
- Fear that loved ones won't cope without you
- Fear of being unprepared
- Feeling sad
- About leaving your family behind
- About not achieving all you wanted to
- About not seeing the children grow up, grandchild born – all sorts of things to be sad about
- Feeling resigned
- I can't do anything to stop this so may as well just get on with it
- Feeling peaceful
- you may have a religious belief
- you may have a religious belief
- Feeling worried and anxious
- Am I still needed as a partner/parent/friend?
- Will I lose control of my mind?
- Will it change how people view me?
- Feeling powerless and not in control
- Feeling embarrassed and self-conscious
- about needing help to go to the toilet
- about changes in physical appearance
- Feelings of regret
- I should have done more to look after myself
- I should have spotted it sooner
- I shouldn't be leaving my family
- I should have done more to leave my family financially secure
- I should have made it up with my brother before this happened
- I should never have started smoking
- I made the wrong choices
- I should have listened
- I should have told someone
- I wish I could mend that relationship/heal that hurt
- Feelings of disbelief
- this really isn't happening to me
- this really isn't happening to me
- Feeling numb and shocked
Your carers and family are often on this roller coaster ride of emotions with you too. They won't necessarily feel the same emotions as you at the same time. For example, you may feel resigned and accept what's happening to you while your loved ones feel very angry that you are leaving them.
Talking about how you're feeling can be very helpful although it's not always easy. Take a look in the 'coping with your feelings' part of the website for tips on talking about dying.
Holistic needs assessment
When your condition deteriorates and it looks like you are in the last weeks of life, this is the time to review what's happening to you and assess your needs. This is called a holistic needs assessment. It may have been done before but it is useful to do it again now that your condition is changing to check that your needs are still being met.
Your carers should also have a holistic needs assessment. They are on this emotional journey with you so it's important to check that they have what they need to support them as they care for you.
This assessment is usually done by a health care professional who knows you. If you have cancer, this person may be what's called your 'key worker'. It may be your district nurse or a specialist palliative care nurse. Whoever does the assessment, the idea is to check out what you need now and review plans for your future care.
The assessment is not just about practical issues and physical symptoms. It's also about psychological and spiritual needs too so that as much can be done as possible to help you achieve the peaceful death you want in the place you choose.
The kind of things covered in a holistic needs assessment are:
- Are you where you want to be as the end of your life approaches?
- If not, how can we help get you there?
- Example – you are in hospital but want to die at home
- Example – you are at home and would like to die in a hospice
- Unfortunately we can't get you to that lovely beach you went to on holiday
- Review of your medication – do you still need medicines you may have been taking for years?
- What symptoms do you have now?
- What can be done to help control your symptoms?
- What symptoms may develop later?
- Organising a 'just in case' box of medication to have at home so it's available at short notice if you need it
- Reviewing your wishes about burial or cremation, organ or tissue donation, funeral plans
- Who is looking after you? – are they managing? Do you need more help?
- Do you need to make changes at home? Example - bringing your bed downstairs
- Do you want to go to church or be visited by your faith leader?
- Do you need help to deal with your emotions at this difficult time?
- Are you receiving all the financial help you are entitled to?
- Do you need to be referred to other professionals for more specialist help? For example – clinical psychologist, social worker, district nurse, specialist palliative care team, pain control team
- Are there treatments or procedures that you DON'T want?
For many reasons, we know that it can be difficult for people to talk about their concerns with health care professionals. It's often tempting for health care professionals to concentrate on physical symptoms and avoid talking about feelings and emotions.
A useful way of finding out about the concerns of people is to use a questionnaire called a distress thermometer. This has three parts.
Part 1 asks you to circle the number on the thermometer that best represents how much distress you've been in today and during the last week.
The second part is a list of problems divided into 5 sections – practical, family, emotional, spiritual and physical. You tick each item that's been a cause of distress for you during the last week including today.
Part 3 asks you to pick, out of the items you've ticked, the 3 that most concern you.
Download a printable version of the distress thermometer that is used by Lancashire Teaching Hospitals NHS Foundation Trust. This one adds 3 extra questions to help you focus your thoughts on what might help deal with the distress:
- What do you do to cope/feel better?
- What help are you already getting?
- What else might help?
Completing the distress thermometer before being seen by the doctor or nurse can help to focus the consultation on areas that are important for you. You may be given this whist waiting for your appointment or you can print this off and take it with you. It helps in the assessment of need as, for example, it's easier to see whether the problems are practical or more emotional or physical. Knowing this can help to identify what can be done to help address the problems.
The distress thermometer tool has been used a lot in cancer patients as part of a holistic needs assessment and it is now being used more widely in hospitals and out patient clinics.