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Thursday, October 11. 2012On the topic of death, Bill Keller at the NYT gets it wrong againKeller seems to have written his glowing essay about the Liverpool Protocol, If he had spoken with American doctors, he would know that most American internists do something very similar with patients whose condition is hopeless, and do so routinely. Daily. Everybody dies. American hospitals have plenty of patients with "DNR" (Do Not Resusitate) orders on their charts, and hospice units and hospice centers are common in the US. I see two exceptions, occasionally. One is when the family or patient is adamant about "Do anything and everything." These tend to be people who don't know much. The second is with some terminal cancer patients. I have seen terminal cancer patients, with widespead metastatic disease in the ICU, dying while the latest cancer chemotherapy is still being pumped into their veins. It's pitiful. Generally, doctors know when to give up and do not view death as an enemy. Unfortunately, Bill Keller seems to be addressing a straw man. Keller should read this: Why Doctors Die Differently - Careers in medicine have taught them the limits of treatment and the need to plan for the end. Doctors know when they're a goner, and when their patients are too. Most docs do not offer false hope, and do wrong when they do.
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Good post. I hope that when time comes, I will die like our beloved golden: diagnosed w ghastly problems requiring painful and invasive treatment by an expensive vet. Which we refused and took doggie home to live life to the fullest for as long as possible.
3 years later, after romping for miles on the beach with his buddies, he collapsed for a nap under the piano. And never walked again. Cancer had become leukemia. He died two days later, not in pain, but weak, and at home with us and the cat (who would not leave his side and licked him tenderly). Ideally, we wd all die like that. But unfortunately death isn't always that gentle. It depends on your diagnosis. One parent died horribly of pancreatic cancer which caused excruciating pain and digestive disturbances. Shaking and falling down so weak. Needing IVs because unable to eat or drink. And yet that parent died at home. Undoubtedly better than in the hospital, but only possible with very expensive home nurses. You don't always just go about your business then keel over dead. A final illness can be debilitating and protracted, particularly when a person is reluctant to leave loved ones. There is a mythology around the "good death " similar to the foolishness about a perfect natural childbirth indulged in by women who have not yet borne their first child, who think one can control powerful forces of nature and have exactly the outcome one wants, merely by wishing. As I said, it all depends what you get. I certainly intend to avoid treatment myself. But sometimes the disease killing you is so vicious that one needs fairly intensive interventions just to alleviate suffering. And Pot smoking is not what I mean. I watched the other parent die in a hospital of metastasized breast cancer and the assorted problems the other tumors caused. Even w an NHS unwillingness to spend much money on an old dying person, they needed more 24/7 care than the family cd provide. When we decide to refuse treatment, then, we had better be sure we have a healthy spouse and kids who are willing to put their own lives on hold while we die. “Death is the only wise advisor that we have. Whenever you feel, as you always do, that everything is going wrong and you're about to be annihilated, turn to your death and ask if that is so. Your death will tell you that you're wrong; that nothing really matters outside its touch. Your death will tell you, 'I haven't touched you yet.”
― Carlos Castaneda, Journey to Ixtlan === http://www.youtube.com/watch?v=QwgnDn8ez9g Saturday will be the fourth anniversary of my husband's death. We had been married for 37 years. He came down with pnuemonia and was too stubborn to go to the doctor's when he first got sick. He was in the ICU for two weeks before he died. He did not have insurance because I did not make enough to pay for his coverage and he was unemployed.
Early on, one of the doctors showed me x-rays of his lungs and was upset at the extent of the damage. He wanted me to consider a DNR at that time, saying that it is what he would do, if it was his brother lying there. I was not willing to do it at that time. I needed hope, to be able to process what was happening to him. To the credit of all the staff at the hospital, no one pushed me to make that decision. As his condition worsened, I was able to see for myself that the time for hope had passed. I signed for the DNR and authorized removal of the ventilator. It is one thing to have an idea of how you would behave in that situation. That's how I used to think anyway. I can tell you that you know nothing of what it is like, until you experience it for yourself. We need to err on the side of caution and give people time to make the difficult decisions. It has to be something they can live with. You don't want to be that person who feels you were pressured to give up too soon, that maybe there was something else that could have been done. We are dealing with real people in these situations, not just meaningless figures. I don't ever want to live in a society that can't factor in compassion when dealing with illness. Teri, I'm sorry this happened to you. You make an important point about not rushing people in such an important decision. It's one thing if a patient is facing a long wasting illness, but quite another when the illness was sudden. You cannot go through the rest of your life wondering if you made the wrong snap decision at a time when you were nearly out of your mind with shock and grief.
Just over 7 years ago I was diagnosed with lung cancer. Long stroy short I had part of my lung removed and I'm still here. But make no mistake facing death is not pretty and no matter what you or the doctors say, yes, death is the enemy. Four years ago my father in law died from lung cancer. One year ago my mother in law died from lung cancer. I can assure you as difficult as these events were for the family the impact on any of us is not the same as it is when it is YOU facing death. Yes death is inevitable and we all will face it but do not under estimate the difference between impending death of someone you know and impending death of yourself.
My niece, a newly fledged doctor, is struggling hard with families who aren't coping with the imminence of death, especially if they are unsophisticated or uneducated. They will beg her to sedate their loved one, for instance, insisting that if he just gets some rest, he'll be fine. My sister is trying to help her understand that they're overwhelmed and need more time than she would need to understand what is happening, not only because they're unsophisticated but because they're fighting through a haze of fear and grief that she doesn't feel. She's not old enough yet to know how debilitating that is.
The one picture that most fills me with self-loathing is that of having a terminal illness, and insisting on every measure, no matter how expensive, that will prolong my life. To be so "besotted with the fear of death" that I would beggar my family and my nation for the sake of a few more weeks of life is to me the ultimate dishonor.
I can understand a child being afraid to die, because this hateful world is greatly skilled at filling children with fears. But nothing that considers itself an adult has any business making a frantic scramble to stave off the inevitable. And to my loved ones, this is the bargain we made with fate when we chose to love: Either they lose us or we lose them. |