{"id":44224,"date":"2019-03-14T13:40:21","date_gmt":"2019-03-14T12:40:21","guid":{"rendered":"https:\/\/blogs.bmj.com\/bmj\/?p=44224"},"modified":"2019-03-25T17:12:44","modified_gmt":"2019-03-25T16:12:44","slug":"nicola-bennett-us-healthcare-system-callous-financially-menacing-force","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/bmj\/2019\/03\/14\/nicola-bennett-us-healthcare-system-callous-financially-menacing-force\/","title":{"rendered":"Nicola\u00a0Bennett: The US healthcare system can be a callous and financially menacing force"},"content":{"rendered":"<p class=\"standfirst\">Nicola Bennett describes what it was like to deal with the US healthcare system throughout her husband&#8217;s illness and subsequent death<\/p>\n<p><!--more--><\/p>\n<p><span style=\"font-weight: 400\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft wp-image-44229\" src=\"https:\/\/blogs.bmj.com\/bmj\/files\/2019\/03\/nicola_bennett_headshot.jpg\" alt=\"\" width=\"155\" height=\"121\" \/>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. <\/span><\/p>\n<p><span style=\"font-weight: 400\">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\u2019s combination of multiple healthcare providers and private insurance can be for uninsured or underinsured patients and their families. <\/span><\/p>\n<p><span style=\"font-weight: 400\">In December 2015 my husband Will started to complain of nausea and tiredness. Will\u2019s lifetime aversion to going to the doctor was overcome by the fact that his great friend, Hans, was one, so Will consented to a<\/span> <span style=\"font-weight: 400\">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. <\/span><\/p>\n<p><span style=\"font-weight: 400\">Shortly after New Year\u2019s 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\u2019s 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\u2019s life expectancy. \u00a0The 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. <\/span><\/p>\n<p><span style=\"font-weight: 400\">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. <\/span><\/p>\n<p><span style=\"font-weight: 400\"> The day of Will\u2019s surgery, I had to go to the hospital\u2019s 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? \u00a0They reassured me but could make no promises. They took my credit card details. <\/span><\/p>\n<p><span style=\"font-weight: 400\">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. <\/span><\/p>\n<p><span style=\"font-weight: 400\">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\u2019s ability to let go of life with equanimity.<\/span><\/p>\n<p><span style=\"font-weight: 400\">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. <\/span><\/p>\n<p><span style=\"font-weight: 400\">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. <\/span><\/p>\n<p><span style=\"font-weight: 400\">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 \u201cself-pay,\u201d 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. <\/span><\/p>\n<p><span style=\"font-weight: 400\">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\u2014largely too late\u2014that because I was a PhD\/MA student, we were eligible for Obamacare. <\/span><\/p>\n<p><span style=\"font-weight: 400\">I found the process of working through the bills after Will died\u2014reminded of his pain, pleading with providers\u2014excruciating, and I could pay. What, then, \u00a0must 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. <\/span><\/p>\n<p><span style=\"font-weight: 400\">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.\u00a0Yet at a system level, there is little mercy.<\/span><\/p>\n<p><em><strong><span class=\"il\">Nicola<\/span>\u00a0Bennett<\/strong> 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.<\/em><\/p>\n<p><strong>Competing interests:<\/strong>\u00a0I have read and understood BMJ policy on declaration of interests and declare the following interests: None.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Nicola Bennett describes what it was like to deal with the US healthcare system throughout her husband&#8217;s illness and subsequent death [&#8230;]<\/p>\n<p><a class=\"btn btn-secondary understrap-read-more-link\" href=\"https:\/\/blogs.bmj.com\/bmj\/2019\/03\/14\/nicola-bennett-us-healthcare-system-callous-financially-menacing-force\/\">More&#8230;<\/a><\/p>\n","protected":false},"author":1,"featured_media":44226,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[5749,1357],"tags":[],"class_list":["post-44224","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patient-perspectives","category-us-health-care"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.5 - 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