KEIN SCHÖNER TOD (Not a good death)

A recent op-ed in the New York Times (“This was not the good death we were promised”)  was a poignant piece written by a woman whose father recently died from pancreatic cancer.  Note: I use die and death here, not pass, pass on, pass away, cross to the other side or expire.  There is a reason to use die and death, finality.  Pass on and crossing over have the sense of traveling somewhere; when I die, someone else is going to be moving my lifeless body.  I’d like to believe I will travel to the Rainbow Bridge, but I will cease to exist.

The elderly man developed severe pain the night before, as it would happen, he died.  There was an hour delay reaching a nurse (not the physician) who told the family to give the man an extra oxycodone, the only pain medicine he had received.  The family became desperate and found some lorazepam and morphine from a prior hospitalization of another family member and gave them, too.  When the nurse came at midnight, she had no analgesics with her.  Eventually the morphine wore off and the crisis nurse who was supposed to come by in the morning didn’t because she was ill. The morphine pump that the patient needed, and one of the nurses was surprised that he never had one, came at 4 p.m., 8 hours after it was expected.  By then, the man was comatose and died shortly thereafter.

He died at home, in pain, although realistically, his last few hours were spent comatose. That doesn’t matter.  He became comatose while the family was trying to get help, they didn’t say their good-byes, and from their view, his last hours were spent in pain.  The author I suspect felt guilty that she failed her father, that she didn’t say good-bye, and that his last hours were so difficult.  That I can relate to.  My parents both died quickly and not in pain, but I still felt guilty about what I did and did not do.

This death should have been easier, recognizing that dying is not easy for any loved one.  The man should have had plenty of pain medicine available and the family needed to know how to give it.  We have a major problem with pain in this country: on one hand, we allowed an opioid epidemic to occur based on the idea that pain was a 5th vital sign, which it never should have become.  Chronic pain, especially “failed back syndrome,” should not be treated with narcotics, because they don’t work and risk addiction. I still am astounded the medical community and accrediting companies once felt that no patient should suffer pain.

On the other hand, we often under treat cancer pain, thinking, inappropriately, that patients will become addicted.  They won’t. This sort of pain does not lead to addiction; the patients will soon die. They should receive whatever necessary for their pain, even if it suppresses their breathing so that they may get pneumonia or even die.  I thought we had dealt with this issue forty years ago.  Palliative medicine specialists have told me that it is possible to deal with end of life pain without using Death With (DWD) laws, such as in Oregon and four other states.

I disagree, know of those who saw the deterioration of their body, felt the pain, and did not want to go through the long, difficult natural process of death.  I respect that; much of medicine is determining where nature should and should not take her course.

Nobody from palliative care physician saw this man in his final hours. The author wrote that she was never aware that 24/7 care was based on staffing, not a promise, as she had been led to believe.  Hospices self-evaluate their pain management, and this hospice weighed in at 56 per cent.  The head of the National Hospice and Palliative Care Organization was quoted as saying that “good hospice experiences ‘far outweigh’ bad ones.”  Their organization should remain silent on DWD until they have their act fully together on the “bad ones.”

End-of-life care is difficult, although there is lack of pressure of finding a cure or healing. The problems here were lack of planning, limited staffing, lack of follow-up, and lack of family education, to name four.  This man was close to death, since with virtually no care, he survived 22 hours after the crisis started.  It wasn’t like he would require many resources.

Am I being too hard on my colleagues?  No.  Do I have a bone to pick with some?  Yes.  Stories like this are likely to increase as more hospices become for profit, for staffing cuts are easier to make than system fixes that can address problems.  I know such, because I bet my latter medical career on helping medical personnel fix bad systems, and I lost. With family education and a morphine pump, this man would likely have had a peaceful death.

Back to DWD:  at their time of choosing, alone or with others, those who have been suitably screened want to be able to say “no more” and take something that puts them into a coma where they will die. This has been vigorously resisted as “assisted suicide,” but such  is pejorative, because the word “suicide” is interpreted to mean an otherwise healthy (but depressed, perhaps) individual ends their life and would not be expected to die soon. Instead of allowing someone to choose their peaceful end surrounded by family, we admit some terminally ill patients to hospitals, pump on their chests, do heroics, ignore Durable Power of Attorney papers, leading some, as the husband of a patient I once consulted upon to commit murder-suicide, dying alone.

I read about the double death weeks after I saw the woman.  She had a metastatic brain tumor, the treatment was minimal, other than radiation, which was going to buy her a short period of time. Her husband challenged me that if I couldn’t do anything, he would take care of the matter. They both survived the concentration camps but not cancer. Yes, we all have to die, but there are good deaths and bad deaths.  Theirs were bad.

DWD is for those who want control over the end of their days and don’t want to take their chances with hospices, whose care has more variability than it should, especially with the rise of for profits.  DWD has many safeguards, with two physicians—one not a treating one—certifying that the patient qualifies, and then having a prescription written for usually a barbiturate.  The patients are followed by volunteers, on call, who will be there if desired if the patient is ready to die.  Since 1997, since the law was passed, 1250 people have died using it.  One-third of the people who get the drug never use it, dying naturally.  The “thousands who would die” took twenty years to reach 1000, and every year in the state, 32,000 natural deaths occur.  Those are the facts.  DWD is fewer than 0.02% of the natural deaths in Oregon.

Richard Rettig, a medical historian, wrote, “the moral cost of failing to provide lifesaving care was deemed to be greater than the financial cost of doing so.”  He was referring to ESRD (End Stage Renal Disease), why dialysis is covered by Medicare.

The moral cost of failing to provide end of life care is greater than the financial cost of doing it.

I’ve looked at the Hospice Data Collection, and I don’t see anywhere how anyone determines the patient died a “good death.”  A German movie I know defined ein Schöner Tod (a good death) as not dying alone. I would add adequate control of pain, patient and family’s questions answered, no system failures in the final week of the patient’s life, and not dying alone.

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