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.
- Wye, L et al. 2014, ‘What works in ‘real life’ to facilitate home deaths and fewer hospital admissions for those at end of life? Results from a realistic evaluation of new palliative care services in two English counties’. BMC Palliative Care, vol 13.
- Purdy, S et al. 2014, ‘Impact of the Marie Curie Cancer Care Delivering Choice Programme in Somerset and North Somerset on place of death and hospital usage: a retrospective cohort study’. BMJ Supportive & Palliative care.
- Percival, J et al. 2013, ‘”Earthly Angels”? A qualitative study of the domiciliary care worker role in meeting the needs of families caring for those dying at home.’ Palliative & Supportive Care.