Dying in the UK? Lucky you.

Lesley Wye photoBy Lesley Wye
Senior Research Fellow
Centre for Academic Primary Care

My father is dying. This is pretty bad. What’s worse is that he’s dying in the US.

The Economist Intelligence Unit recently published a report that ranked the UK as the best place to die in the world, with the US ranking 9th, and I’m inclined to agree.

With advanced prostate cancer, a tumour in his liver 14 cm long, another pushing in his bladder and a recent bout of pneumonia, we’ve been told that my father has “weeks” to live.

He’s currently in a ‘skilled nursing facility’ on the premises of a retirement community. Medicare, a US federal government programme, is paying for his care, but only while he continues to have physiotherapy twice a day. It’s rather heart-breaking watching my father struggle to stand for more than 30 seconds and then collapse exhausted in his bed. But he has to keep trying, otherwise Medicare stops paying and it all starts costing a lot of money.

This is how complicated it is. Medicare is willing to pay for 30 days skilled nursing in full. After that, my parents need to pay $157.50 daily to supplement Medicare. But my dad might find it too hard to continue with the physiotherapy, or the physiotherapists might decide that he’s not making enough progress, so then he goes onto hospice care.
Hospice care here means palliative care nurses coming to wherever the patient is – their home, an in-patient facility, a hospital, But for hospice, Medicare will only pay for medical and nursing at the in-patient facility, not room and board. My dad gets 60 days at the facility at the reduced room and board fee of $100 daily. But he used up 32/ 60 days a few months ago with a fall, so after 28 days the $100 daily jumps to $248 until 31 Dec, when this then increases to $279 daily.

Possibly, his long-term care insurance will cover the room and board and contribute $129 daily. This is fine if he only lives for 28 more days, once he starts hospice, but should he live longer my mum will need to find $119 daily. Alternatively, she might want to consider putting in a claim to Blue Cross/ Blue Shield (another insurance company). But they will only pay for medical and nursing hospice care for in-patients for 30 days, followed by a gap of 21 days of no coverage, before coverage starts again for 30 more days. So if my father lives for longer than 30 days, it will cost my mother thousands.

I despair. And despite my best efforts, I can’t figure out if it’s cheaper for him to stay in the care facility or die at home, because then he’d need personal caregivers at a cost of $200 a day.

Because I’m so busy trying to sort this out, I have limited time to actually be with my dad. I’ve spent several hours every day calling insurance companies, meeting with financial administrators and filling in forms.

I’m a health service researcher, who is used to asking questions and finding things out, and I have an interest in end-of-life care. But as an elderly American family friend said: “Who’s going to do this for us? Who has the time? Who has the energy? Especially when someone you love is dying”.

I know that navigating end-of-life care in the UK can be challenging, because it crosses the NHS, social and voluntary care sectors. In fact, I’ve published academic papers about this very subject. But honestly, the English system is so superior to what I’m finding here in the US. I’ve never appreciated it more.


Papers:

4 thoughts on “Dying in the UK? Lucky you.

  1. Dear Lesley
    So sorry to have to read this story. How often have I said over the years – thank God or whoever it is for the NHS. And for me it is a heads up regarding a very close friend in the US whom I know will need this sort of care in the next year or so. His story so far reminds me of another wonderful aspect of the Nhs and I put the N in capitals as at least for England it is just that at least in terms of RCTs. Not so in US where there are so many private competing institutions in any one city that do not share recruitment for trials. A real post code lottery as we all know trials deliver overall better care. If we do meet the US mid Atlantic in terms of health care we need to be very careful to choose what we keep and what we give up.

  2. And all of this in the context of the UK recently considering the Assisted Dying Bill. I thought I was more for than against the Bill until I noticed how relieved I was it had been rejected. When we start to put a price on dying how can we expect our elderly relatives not to feel a financial burden to their families?

    • I just hope we are allowed to make decision on assisted dying when we still have the luxury of it being an ethical debate. 5-10 years and the assisted dying bill of its time will be being put forward with economic arguments

  3. You are doing splendidly my darling (I’m her husband, I am allowed to call her that!)

    Whilst I agree with Debbie Sharp about “god save the NHS”, I would say that the vast amount of palliative care (aside from last 6 weeks of cancer) is managed through social care and it is these basics we still don’t get right here in the UK. My mum (Lesley’s mother-in-law) is also dying. Not as quickly, but is 94, bed bound and catheterised. So not a “palliative case” but dying nontheless. Her current situation was caused by classic old person condition – urinary tract infection and a fall. Her hospital experience was woeful to be honest. It was over-medicalised. After trying to get her home for 4 weeks I finally got things sorted and a discharge date set only for it to be delayed as they wanted her seen by a psycho geriatrician because “she seemed a but depressed”. What the flick did they expect! Anyway as soon as the hospital hit black alert they chucked her out without equipment, meds or a single continence pad (mum is double incontinent) nor did they tell her GP or district nurse. We have organised 5-times-a-day visits from the fantastic Maria who has basically transformed her life and given her some dignity and ownership back. The vast majority of terminal care is delivered by these minimum wage zero hour contract “untrained” carers. We have been lucky in Maria’s dedication. Others are not so.

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