Is care for the dying, caring or dying?

5th June 2015. 

This post was written in response to the death of my mum, Hilary, to give voice to my concerns and vent my frustration. Some things have changed in some places,  I still think there should be a UK standard for terminal care in the home. If there is one now, please let me know

19th November 2010

How do you see the end of your life?

Would you like it to be surrounded by the people you love, in a loving, caring, safe environment?

Would you like it to be pain free?

Would you like to feel relaxed and comfortable?

Would you like your loved ones to feel comforted and to be stress free so that they can concentrate on making the most of the time they have with you?

Maybe you expect to be able to die with dignity at home, in hospital, or in a hospice, with medical care available quickly to meet your changing needs.

What happens now?

Some hospitals will not allow terminal patients to die in the hospital. Patients are discharged to die at home or in a nursing home. This ensures that hospital beds are kept for acute cases only, to reduce waiting lists and keep the numbers of deaths in the hospital to a minimum.

Do you think that Hospices are places where you can go to die in safety and comfort? Do you donate money generously to support their work with the dying? Some hospices don't allow terminal patients to stay until they die, but discharge them to their own home or to a private nursing home with a "care" package once they are "stabilised."  Some hospices offer palliative expertise not until death, but to help you die elsewhere.

So you have been discharged to your own home or to a nursing home, where pain or breathlessness may accelerate faster than community or care home nursing can cope with. Family members or neighbours may find themselves pleading with "Out of Hours" NHS staff on the phone to get a doctor to visit. This can take several hours, and the doctor, unfamiliar with the patient's history or the palliative care team's recommended approach, can only offer temporary relief.

You may think that as long as you have access to your morphine tablets you will be able to manage, but as soon as you enter residential care, you have to hand over all your medication. You may find yourself with escalating pain, but with care staff unwilling to give any more pain relief until the "Out of Hours" doctor can arrive, maybe hours later.

You may be alone in your home, with only an emergency button to press. But where is it? Maybe your cancer has progressed to the brain and your vision is disturbed. Once you press the button you will have to wait at least 20 minutes maybe for a stranger to arrive to check you, and then wait beyond that for medical intervention.

Dying does not come cheaply

Once you are discharged from a hospital you are no longer funded automatically by the NHS. You will need to qualify financially for free care, or start to pay for it from your assets.

If you need night time nursing, in many locations there is no service available on the NHS. To have night time assistance to get to a commode quickly or to monitor your pain, you will have to employ a private nurse unless one of the excellent Marie Curie nurses is available, a rare occurrence as they are severely short funded and short staffed, and they are not allowed to give medication.

If you need daytime care, a carer service may be available. You will get a short visit morning and night and then be left on your own, with that emergency button, but the cover is means tested and charged by how long the carer stays.

If you go into a nursing home, and you have more than £26000 in total assets, you will have to pay for your residential costs and also for some nursing costs, unless you have passed the strict funding assessment criteria - that is if you have been given a social worker, if your social worker knows how to work the system and if your district nurse has remembered to pass your details over.

So does dying sound like fun?

Does it sound like caring for the dying, is dying?

Do you care about the dying?

Do you hope that someone will care for you when you are dying?


How to help

Please, if you care about how we are treating the terminally ill amongst us, find out how they are treated in your area.

Contact your local hospices to find out whether they provide final days care, or whether they send people home, or to a nursing home to die. How many beds are available? How many nursing homes are registered for palliative care beds?

Ask your local council what care services are provided to people who live alone and who are dying.

Check amongst your friends, relatives, neighbours. What are their experiences? Do they need any help?

Offer to help to get the care they need, and be prepared to fight to get it.

Offer to sit with the sick, help with washing, shopping.

Offer to help the carers with their own domestic needs too.

Be a phone contact on the end of that emergency button. Neighbours are the people best able to help someone quickly.

Contact your local councillors and MPs. Push hard to get levels of care increased and standardised across the country.


Be Caring

Dying people can't fight to get the care they need. Dead people can't complain about their treatment.