Categories
Uncategorized

Hello world!

Welcome to WordPress. This is your first post. Edit or delete it, then start writing!

Categories
Uncategorized

Palliative Care Directory

This directory is intended as a resource for all healthcare professionals who require information about all palliative care services available for cancer patients and their carers across the Lancashire & South Cumbria Cancer Network (LSCCN). This single directory will guide you to the location and service you require wherever it exists within the LSCCN.

Network Specialist Palliative Care Directory 

Categories
Uncategorized

Routes to Success

  

The Routes to Success are a series of documents and guides developed by the National End of Life Care Programme which aim to provide the workforce with simple guides to support the implementation of the end of life pathway. 

Routes to Success guides have been produced to support staff in many sectors in delivering end of life care and currently the series contains guides for domiciliary care, hostels and for homeless people, care homes, acutes hospitals and for people with learning disabilities.

All these guides, supporting sheets and more information around the series can be found on the National End of Life Care Programme website here. 

Categories
Uncategorized

Changes in consciousness

As you withdraw from the world your brain starts to shut down making you less aware of what is going on around you.

You will spend more and more time asleep and may be quite drowsy in the periods that you are awake.  Pain killing medication may contribute to this drowsiness.

To loved ones and carers it can look like you are no longer interested in them and this can be hard for them to cope with.  This apparent lack of interest is part of a natural process that you have no control over.  It’s preparing you for death and is often accompanied by a feeling of peace and tranquillity.

This is why it’s important not to put off making plans and saying what you want to say.  If you leave it until the last days of life you may not get the opportunity.

 

As the time you spend asleep increases, the depth of your sleep may also increase so that you lapse into unconsciousness or go into a coma.  This period of time in a coma can last from hours to days.  Loved ones may find it comforting to know that you can probably still hear them and feel them holding your hand even if you cannot respond.  They may want to continue touching and talking to you or playing your favourite music.

Despite being in a coma, it is possible that you may still feel pain and your carers will be looking out for signs of distress so that you can continue to receive medication that can help.  Signs may include being restless or moaning.

Most people do not rouse from their coma. Gradually your coma will get deeper and deeper and eventually your heart and breathing will stop and you will die.

This transition from coma to death can be difficult to detect especially as your breathing is likely to be very shallow with long pauses between breaths.

Categories
Uncategorized

Emotions

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 that helps support you in this feeling
  • 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/healed that hurt
  • Feelings of disbelief
    • this really isn’t happening to me

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.

Categories
Uncategorized

Changes in skin

Whereas most of the body’s organs are hidden inside and we can’t see what’s happening to them, the skin is very visible and shows signs of the dying process.

Pressure Sores

The reduced blood supply to your skin makes it very vulnerable to damage even with minimum pressure and very gentle handling.  It’s common to get bruising on the skin that can sometimes look quite alarming.  Skin that is in contact with surfaces can develop pressure sores despite excellent skin care from carers and professional staff.

As you spend more time in bed you will find a position to lie in that is the most comfortable for you.  The skin over the parts of your body that are in contact with the bed is squashed and the blood supply that is already reduced is cut off even more.

When this happens the skin dies and breaks down leaving a sore. Your carers will try to prevent this happening by encouraging you to move and helping you to turn over every couple of hours.  They may notice if areas of your skin are looking more discoloured and pay particular attention to reducing the pressure on those parts.

You may have a special mattress for your bed to help reduce the pressure.

There are some things that make you even more vulnerable to developing sores on your skin.  These include if you have been taking steroids or chemotherapy, incontinence, friction and infection.

Skin sores can be very painful as the nerve endings in the skin are damaged.

If you develop sores on your skin there are various ways of dealing with them so that you feel comfortable.  If you are at home your GP and district nursing team will help your carers and advise on treatment.  If you are in a hospital, nursing home or hospice, the staff there will look after your skin.

 

Colour and temperature

As you get weaker, your circulation starts to shut down so less blood gets through to your skin. This means that your skin may look pale and will probably feel cool.  It’s likely to be most noticeable on your hands, feet, fingers, toes, nose and ears.

Your skin may also look mottled with a bluish/purplish discolouration.

Swelling

You may notice swelling of all of your body or just parts of it.  Gravity helps to pull the fluid to the lowest position so if you spend a lot of time lying down you may notice that your face becomes puffy and your eyelids swell.  If you spend a lot of time sitting, you may notice the most swelling is in your legs.  Sometimes the swelling can be huge making your legs more than double in size and making them feel very heavy.

Sometimes some of the excess fluid trapped under the skin can start to ooze out from the skin leaving it feeling damp and clammy and contributing to the risk of developing pressure sores.

Pain, tenderness and other sensations

The nerve endings in the skin are damaged by the reduced blood supply and so they do not work properly.  These damaged nerve endings send confused messages to your brain which tries to make sense of them.  The result can be a range of sensations:

  • Skin feels cool to touch but you feel like it’s burning hot
  • Skin is painful and tender at the slightest touch
  • Skin feels like there are ants running up and down underneath it
  • Skin feels itchy

Categories
Uncategorized

Changes with pain

Being in pain is often a big concern for dying people and their carers.

Pain is associated with many life limiting conditions and may be something that you have lived with for a long time.

You may already be receiving pain killing medications to help control your pain.  This will be reviewed to make sure it is as effective as possible and changes in your medication may be suggested.

Sometimes the way you take your pain killing medication may be changed to make it easier for you – for example switching from oral tablets that are hard to swallow to liquid or skin patches or injections.

In the last days of life pain may get worse and for some people now may be the first time they’ve experienced severe pain.  This is thought to be due to the nerve endings not working properly and sending pain messages to the brain.

 

There are a variety of pain killing medications (also called analgesics) available and the type you are given will depend on a number of factors:

  • What you have tried before
  • What you are already taking
  • Whether you can manage oral medication
  • Whether you are allergic to any analgesics
  • Other symptoms you may have that may be affected by analgesics
  • Whether you have kidney failure – this can affect the type and dose of analgesic given to you

All the health care professionals involved in your care will do their best to help with pain control. They will ask for more expert advice, for example from the specialist palliative care team or hospital based pain control team, if necessary.  Whilst it is usually possible to reduce pain and make it more bearable, it is not always possible to take the pain away completely.

Categories
Uncategorized

Planning for your future care

Sadly, many people do not find out that they are dying until they run out of time and are too ill to make plans and do the things they want to do. 

If people can be identified as likely to die in the next 12 months, there is time to plan ahead.

There are lots of things you can do to plan ahead even if you are not ill – just ask yourself ‘what if I was told I had a week to live?’ then think:

  • Will those around me know how best to support me?
  • Will they know about any strong wishes I have about how I want to be cared for?
  • Will I have made a will?
  • Will those I love know how I feel about them?
  • Will relatives know of any plans I’ve made for after my death?
  • Will I want to spend the last few days of my life worrying about all this?

See ‘creating a personal portfolio’ for more information

Categories
Uncategorized

Life limiting illness

Despite advances in medical science, there are many serious illnesses that people can die from. Some of these illness are ‘life limiting’ illnesses – they are known to shorten people’s lives. These types of illnesses include, among others, heart failure, diabetes, liver failure, lung disease, motor neurone disease, multiple sclerosis, HIV/Aids, kidney failure needing dialysis, certain forms of cancer, spread of cancer and recurrence of cancer that has previously responded to treatment.

There are many illnesses that people die from that do not necessarily shorten life. A good example of this kind of illness is dementia when sufferers may live for very many years and die in old age. 

Sometimes there may be more than one illness at the same time that increases the risk of dying – for example chronic obstructive pulmonary disease (COPD) and pneumonia, diabetes and kidney failure, a heart attack in someone who has had a stroke or severe infection in someone having cancer chemotherapy.

Sadly, life limiting illnesses can affect children and young people too.

You may have been born with a condition that affects your health and life expectancy – examples of this type of condition include cystic fibrosis, muscular dystrophy and severe cerebral palsy. You may develop a serious illness as a child, teenager or young adult that limits your life despite years of prolonged and extensive treatment. Examples include certain types of cancer and recurrence of cancer after previous successful treatment.

If you think you might have cancer or another serious illness it is important that you talk to your GP about how you think your health has changed. 

It is often a huge shock if you’ve been diagnosed with cancer or another life limiting illness. Information you are given at the time goes over your head and leaves you with lots of unanswered questions. It is important that you speak to your doctors and ask them to explain again. Don’t be afraid to phone your consultant’s secretary to ask for an appointment. It is worth thinking about the questions you want to ask and making a list prior to your appointment and, if possible, taking someone with you. If you’ve been given the contact details of someone working with your consultant or GP such as a specialist nurse, don’t be afraid to contact them too.

Categories
Uncategorized

Living with your illness

Although living with life-limiting illness can affect many aspects of your life, support, information and advice are available from a variety of sources to help you cope with some of the physical, emotional and practical issues you may face:

  • Managing physical symptoms of your illness 
  • Emotional support for you and your family 
  • Assistance with the practical issues, such as school, college, work and finances
  • Some of the healthcare options available
  • Coping with sudden changes in your condition

Here are some sources of help:

  • Your GP
  • Your hospital specialist team  – doctors and nurses
  • Macmillan Cancer Support
  • NHS choices
  • Marie Curie Cancer Care
  • Your faith leaders (priest, vicar, imam etc)
  • Social services
  • Friends and family 

Children and Young People

It’s hard for anyone living with a life limiting condition but it is particularly difficult for children and young people. Somehow it’s harder for their voices to be heard and they can feel that they have no say in what happens to them. There seems to be more pressure to pursue treatments and avoid discussions about end of life care because it’s so hard for everyone, including doctors and nurses, to accept that this child or young person is going to die.

ACT – the Association for Children’s Palliative Care – has some helpful information for children, young people, their families and health care professionals. Visit  www.act.org.uk  or telephone their helpline on 0845 108 2201

For young adults diagnosed over the age of 18 years, living with life limiting illness can be especially stressful both for them and their families. Lots of factors can affect how young adults cope. Concerns around dependency on parents, pursuing higher education and career goals, keeping up with friends, trying to be normal and forming new relationships are just some of the issues. You can probably think of more. Try not to be frightened of talking to your family and friends about your concerns as they can be a huge source of support and comfort.

As your health deteriorates it is important to start thinking about your future care because: 

  • Dying well is more likely to be achieved by talking about it early on. 
  • It is vital that you talk about your need to plan your dying with those around you. 
  • Talking about death doesn’t bring it nearer. It’s about planning for life – because it allows you to make the most of the time that you have. 
  • There are 101 ways people find to talk about dying; there is no right or wrong way. 
  • Not talking about wishes towards the end of life with friends, family and loved ones can mean that people may not get what they want, or die where they want. They might not have expressed their wishes about their care or funeral, or have made a will. They may simply not have said what they wanted to say. 
  • Talking about dying makes it more likely that you, or your loved one, will die as you might have wished. 

Now look at the section on planning for your future care.