Nicola Bennett describes what it was like to deal with the US healthcare system throughout her husband’s illness and subsequent death
Three years ago my husband Will died of cancer while we were living in America. I write this not because I particularly want to share our personal story, but because I want to warn against the expense, inefficiency, and callousness that can mark the way healthcare in the US operates.
As someone from the UK, this stood out starkly for me. I hope that our experience will show how confusing, upsetting, and financially menacing the US’s combination of multiple healthcare providers and private insurance can be for uninsured or underinsured patients and their families.
In December 2015 my husband Will started to complain of nausea and tiredness. Will’s lifetime aversion to going to the doctor was overcome by the fact that his great friend, Hans, was one, so Will consented to a consultation. Hans ordered blood tests and Will and I tried to enjoy the holidays as we waited for the results, but it was obvious that Will was not right.
Shortly after New Year’s Day Hans had to tell us that it looked like Will had advanced cancer. We saw an oncologist, who confirmed that the primary cancer had invaded Will’s liver, as well as his gall bladder and lungs. The options were stark: palliative care or a course of chemotherapy and neither were likely to increase Will’s life expectancy. The one thing our oncologist could recommend was a stent, a small tube inserted surgically to drain the bile, which was blocked by the large tumour in his liver.
As we were not US citizens or residents, we had taken out an annual insurance policy designed for long term visitors, but when we studied the small print we realised that cancer was itemised as an exclusion. I called the company and asked, incredulous, if this could be true? Apparently, yes. All they could suggest was that they could refund our premium and cancel the insurance.
The day of Will’s surgery, I had to go to the hospital’s finance office before he could be admitted and speak to staff there. I had been told that the operation would cost in the region of $8000: could they confirm this, and did the hospital offer any discount for self-pay? They reassured me but could make no promises. They took my credit card details.
It was the beginning of weeks that I no longer remember well. The two stents they had to insert did not work, and Will had to undergo a second operation. The hope of a period of remission that would allow for a skiing trip, or even a walk by the ocean, went unfulfilled.
Friends and family came from abroad to say goodbye. They stayed with local friends, who kept up a stream of soups and casseroles. In our home in the Californian mountains, midday was hot, but by late afternoon Will would be drawing the covers up round his shoulders. In the evening Hans would visit, often offering no more treatment than talk and laughter. In private he said he was astonished by Will’s ability to let go of life with equanimity.
It took just two and a half months. Our son Joe and I were with Will when he died late one evening, holding his hands, and saying words of love and encouragement as he left us.
After the funeral, after the family and friends had gone home, and once it was just Joe and I to carry on with life, the bills piled up: from the hospital, the surgeon, the anaesthetist, the local emergency room where we had taken Will when he had a crisis, the labs, the radiographers, and the MRI operators.
Each provider billed separately. Often there were multiple invoices, swiftly followed up by statements, and almost as swiftly by threatening letters from debt agencies. It was hard to reconcile all the pieces of paper and to work out the total amounts that we had to pay. It was distressing to call or visit every supplier and explain the situation over and over again. I discovered laboriously that each one offered a different discount for “self-pay,” which could be anything from 10% to 50%. Each one treated me differently: some were kindly and helpful; others had to consult their superiors before they could discount an invoice; and some were inefficient, resulting in the letters warning of default debt collection being sent out by computer.
In the end I had to pay $34 000, a saving of $16 000 on the original sum I was looking at of $50 000. It was the cost of two minor surgical interventions, scans and blood tests, and one visit to the emergency room. It did not include hospice care and the drugs Will needed during the last three weeks of his life, as by then I had learnt—largely too late—that because I was a PhD/MA student, we were eligible for Obamacare.
I found the process of working through the bills after Will died—reminded of his pain, pleading with providers—excruciating, and I could pay. What, then, must it be like for people who cannot, and for those who are poor, dispossessed, or mentally vulnerable? I think of the people who have to take on crippling loans or who stand to lose their home if they want to access care for themselves or a loved one.
At a community level, Will and I experienced compassion and generosity that was truly impressive. On the front line, the hospital and hospice care was very good. Yet at a system level, there is little mercy.
Nicola Bennett organised fine art exhibitions and literary festivals until a twist of fortune took her and her husband, landscape architect Will Reed, to California where she wrote and did an MA in depth psychology.
Competing interests: I have read and understood BMJ policy on declaration of interests and declare the following interests: None.