I am visiting a small city in New York State. Once one of the greatest cities in the US, it now has a rapidly declining and highly racially and socially segregated population, with a mixture of affluence on one side of the tracks and neighbourhoods blighted by grinding poverty on the other. My friend, let’s call her Melissa (which is not her real name), moved back here a couple of years ago to take care of her parents, both of whom needed care. Her Dad has suffered a series of strokes, and her Mom has multiple comorbidities. She runs a small business here and now has her Mom, now terminally and quite desperately ill, living with her. She runs her business from the basement of her home, employs two people, and has her Mom upstairs. Clearly contributing to this city’s flagging economy in many ways, she is completely exhausted and gets no respite. I have watched for two weeks as she and her Mom grapple with the American health care system, a daily fight with insurers to get care, and a system of conditionality that makes my blood run cold.
Here are two examples. She found her Mom one morning turning a hue of blue. Realising that she was probably bleeding internally, she tried to get an ambulance to come to the house to take her to hospital. Her Mom’s insurers wouldn’t cover the ambulance advising her that she had to wait until her Mom was unconscious. Unwilling to do that, she dragged her Mom, in terrible pain and with great physical difficulty, to her car to drive her to the hospital. At the hospital, they decided she needed a blood transfusion, but refused to admit her, again an insurance issue. Melissa waited with her Mom at the hospital the whole day, having the transfusion, and then the doctors waiting for her to be “well enough” to return her home. That never happened, so in the late afternoon, they decided to give her another transfusion. They still refused to admit her because the insurance wouldn’t cover that. After the second transfusion her oxygen levels were high enough, they sent her home, again not by ambulance, in the late hours of the night. Needless to say, a few days later, and she is back in hospital again.
Clearly in the terminal stages of her illness, she could have hospitalisation at home via Hospice at Home. Hospice at Home won’t take her on to manage her pain and illness as she does not wish to sign a DNR, a “Do Not Resuscitate” order. Treating her in these final stages is deemed too expensive, a waste of medical resources. So the only way she can get the care she needs, and the care my friend needs so that she herself is able to function, is by agreeing that they can let her die, when she is not ready to go. Melissa has the legal power to sign the order but quite rightly will not without her Mom’s consent. With no-one willing to sign, palliative care is denied.
While the NHS is not perfect, it is not run by insurers. My interactions with the NHS over ill and dying relatives have been many many miles, geographically and metaphorically, from this healthcare hell that Melissa and her Mom are navigating on a daily basis. I am truly saddened to think that anyone who has watched this privatised system in action might think that any elements of it, whether contribution, co-payments, insurance or competition, should be imported into our beloved National Health System. Health care paid for by taxation and free at the point of delivery strikes me as a fundamental social and human right in an advanced welfare state economy. We should protect it at all costs.