Palliative Care and

End of Life Care

Death is always a difficult subject. When an older person approaches the end of their life, it can bring out the best and the worst in them and those around them – both family and ‘carers’.

Death is always a difficult subject. When an older person approaches the end of their life,

it can bring out the best and the worst in them and those around them – both family and ‘carers’.

 

  • Most people say they would like to remain at home, when they are dying. But, if they require 24 hour nursing care or just a lot of care, the chances are this will not be possible – unless a family member can provide it.

  • If fleeting visits from a carer or a nurse are not enough, then the person will probably be forced to end their days elsewhere.

  • Medical or social authorities are quite likely to act under ‘best interests’ to prevent an individual going home or remaining at home.

End of Life

  • If an individual is in hospital, and approaching the end of life, the hospital will probably try to get them out .

  • There may nothing that can be done medically, and staff will argue there is little point ‘blocking a bed’.

  • Relatives could be given stark choices and asked to make instant decisions – whether someone goes home or goes to a residential home or, in some cases, a hospice.

  • It is very useful to be able to make decisions with a Power of Attorney.

  • But the reality is, you have little choice. If you do not agree, you can be forced to do what they want.

 

Your options will be limited to:

 

  • Can you look after the person yourself?

  • Is there a place in a hospice?

  • Choosing a residential home which claims to offer end of life care.

 

Unless, you can organise one of the first two options, the person will be sent to a nursing home.  These are nursing homes with spare beds. They are not an adequate substitute for a hospice and will not offer the same care.  

 

There may be occasional visits from hospice nurses, but  staff will not be as familiar with terminal illness or its effects and will not be as focused as staff in a hospice.

 

Staff in a nursing home may not have any training of end of life care. It is not a replacement for hospital or hospice care. The patient will not have access to senior medical advice and, will have to rely on inexperienced care staff to manage a painful, terminal condition.

 

Sadly, many terminally-ill older people are now sent to nursing homes – fully paid for by the NHS – to end their lives.

It may be better than dying in an open ward at a hospital but not much.

   

Family Reactions

  • While some people are anxious for everything and anything to be done to keep a relation alive, some will be  thrumming their fingers on the bed post, impatiently waiting for the end.

 

  • There may be a strong sense of not wanting to hang about. And, if the end is ‘too long’ coming, the complaints will grow. 

‘It would a blessed release,’ they say. 

 

‘I hate to see them in so much pain,’ they will tell you. In reality, they mean: ‘I hate to see them at all.’

 

I just can’t sit there and watch them,’ they say – because they would rather be watching TV.

 

 

 This process is all given an official helping hand now and older people are hastened to their final destination – whether they like it, or not and whether their family likes it or not. The Liverpool Pathway may have been cut short, but we still have the euphemistically-named ‘palliative care’ and ‘end of life care’.

  When you begin down either of these roads, you know time is very short indeed.

  • Instead of treating someone, nurses talk about ‘making the patient comfortable’.

  • This means heavily sedating them, potentially to a fatal extent.

  • This is ‘palliative care’ and it replaces any actual medical treatment, once the doctors have decided you’re on the way out.

 

 

Palliative Care - the reality

 

Once a decision has been reached that the patient should only receive palliative care, they could be denied any treatment which could prolong life. They may not

  • be allowed to have a drip for fluids,

  • have tests to see what is happening with their cancer or other illness,

  • be given life-saving antibiotics.

  • be resuscitated – even if that is what the patient has expressly requested.

 

  

An OLM staff member was asked by a hospital doctor if a terminally ill relative wanted to be resuscitated. She had said only recently she did want to be resuscitated. The doctor, however, was not having it and said the patient was not capable of making a decision. The doctor sat down with the patient and described in horrifying detail what would happen, if resuscitation was attempted. At the end of which, the very sick, old person agreed not to be resuscitated. Job done.

 

From then on, she was given palliative care. That meant pain relief – lots and lots of pain relief, so that it became hard to know if she was unwell or drugged up.   Did cancer cause her to slide rapidly downhill once she was placed on ‘palliative care’? She had been living independently at home until a couple of weeks before. But, under palliative care, she became incontinent, incapable of speech and quickly died. Perhaps it was the heavy doses of morphine? It was not dignified nor was it ‘comfortable’.

 

End of Life Care

 

As if palliative care were not bad enough, next comes ‘end of life care’. This is code for doing ‘nothing’ – and is like leaving a very sick person to die by the side of the road.

 

If someone on ‘palliative care’ finds difficulty swallowing or is showing another sign of decline, the next stage is ‘end of life care’.  

 

  • As well as not being given any medical assistance, they may now be denied food and drink.

  • Pain killers are stepped up but, without food and fluids, how long can anyone last?

  • Actually, some terminally ill people may last a surprisingly long time, several days, even with the benefit of such ‘care’.

  • Heavily drugged, dehydrated and starving, their final hours are not going to be a ‘good death’ for them or for their family.   

© 2017 by OlderLivingMatters   All text and original photos subject to copyright                    sarah.whitebloom.news@gmail.com

OlderLivingMatters is a journalistic website offering information, guidance and advice based on experience of life today for older people. It is designed to be a friendly hand in difficulties and to highlight the problems of older people and their families. As with any friend, it is not perfect and will not have all the answers all of the time. Everyone’s situation is different and this needs to be taken this into account if you take action. Please be aware that you use the information and advice on this website at your own risk and it is not responsible or liable if things go wrong.