Where Do You Go To Die?

Question Mark v3A long-time patient in his mid-nineties, who lived an independent and full life style, became acutely ill six weeks ago. He lost his equilibrium and was unable to get up from a chair without having his blood pressure plummet and him faint.  When we could keep his blood pressure up, and he tried to walk, he ambulated like an intoxicated individual, swaying from side to side slapping his feet down like Goofy in Disney World.  CT scans of the brain, neck and spine, MRI scans of the brain, neurological testing, cardiac testing and multiple consultants in cardiology, neurology, and endocrinology could not find the cause of his problems. He did develop an aggressive and fastidious urine infection which improved with antibiotics.  It was hoped that with time, good nutrition and help from a team of occupational and physical therapists at a skilled nursing facility, we could return this sweet gentleman to his previous state of life. It did not work out that way.  Instead of improving he declined. He refused to eat or drink. He refused to consider intravenous nutrition or a feeding tube. He was judged by psychiatry to be sane and competent to make those decisions.   Trials of mood and appetite stimulants did not work. The decline occurred over a five day period at the SNF during which I called on him at least daily.

The patient and I had discussions about end of life issues yearly which we documented on his chart. The last discussion in January 2013 revealed that he did not want to be kept alive by machines but was not ready to sign a Do Not Resuscitate (DNR) order. He was against artificial feeding measures such as NG tubes and PEG’s.  As he declined clinically, I reintroduced that discussion to his wife and children.  I suggested we execute a DNR form and begin comfort measures. I asked them to consider a consult with Hospice but assured them we could provide comfort measures without them as well. They declined all help saying they were beginning to consider it but were not quite ready yet to make a decision. The SNF charge nurse was present at one of these discussions and to my surprise called me aside and said, “That man cannot die here. People cannot die here unless they execute a DNR or are in a hospice bed.”   I could not believe what I was hearing. We were in an old age home in a geriatric community with multiple custodial care patients plus the post-hospital rehab type patients.  The charge nurse then brought in the administrator who emphasized the same message. “He cannot die here.”

If the patient’s demise was imminent, the SNF wanted him transferred to the acute care hospital or else they threatened to call 911.    Where then are deteriorating patients supposed to die?  Hospice has become a bureaucracy unto itself and, while their efforts and works are admirable, the cost to Medicare is extraordinary.  Why can’t a deteriorating patient who is not uncomfortable or in distress expire quietly surrounded by family in a SNF?  Ideally this patient should be at home but sometimes the family just cannot provide the support and care in their home?  Is the only alternative an acute care hospital via 911 or Hospice?

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