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Tuesday, April 2, 2013

Let's get practical 4

Comments from The Bitter End  (Final Part in this series)

As mentioned at the end of the third in this series, here are comments I picked out, with my emphasis. This doesn't mean I endorse them; merely that they should be considered with respect and care. 

It's strange but at some point in this story, I lost the fact that who was being talked about were elderly and chronically ill patients. I'm not sure why. I grew up around doctors and hospitals, so I understand that life extension (in terminal cases) is pointless and painful. My mother worked as an administrator for an Intensive Care unit. What she saw there made her decide that all she wanted at the end of her life was to die painlessly and without major medical intervention. The words she uses are to "die with dignity." It is a huge contrast to going into a hospital, young and with fairly good chances of survival. And by young it might mean, 20's or even 50's, without any major health issues or chronic conditions. While in medicine there are all sorts of very difficult decisions, end of life care is probably one of the "easier" ones, mainly because the variables and end results are very much reduced (mainly meaning death). It is no surprise to me at all, when framed in that way, that doctors would completely agree. And again, in other circumstances, life saving procedures are just necessary. Mar. 22 2013 06:12 PM

This podcast took me back three years to when my father owned the way he wanted to die in a way that had us all in awe. I wrote an essay on it, which covers what it was about him that made it possible for him to decide how to end his life and see that decision through, and what it required from us as a family. It is my fervent hope that this account of his death can help people facing similar situations.  Mar. 14 2013 06:12 AM

I am an attending hospitalist physician and I just admitted to the hospital an otherwise healthy man in his 20s who had a fairly minor infection that didn't respond to outpatient antibiotics. When I reviewed the intern's note I was astonished to see that the patient had requested a DNR/DNI status. I asked him to clarify and he cited this radio program and said that according to the program "9/10 doctors" would not want CPR. I assured him that there are probably no healthy doctors in their twenties who would refuse CPR and also asked him what he would want us to do if he choked on his eggs tomorrow morning. He changed his mind and requested full code.... Mar. 09 2013 03:14 AM

Where terminal patients were rescusitated, ALL of those who responded were dead in 48 hours. Jerry, here is the 8% study: Rick, you are right, context is important. We are NOT talking about average people, nor newborns....we are talking about people with terminal illnesses.

Here's a post I wrote on the topic: Feb. 03 2013 02:51 PM

This certainly made me think. I want to remain alive with QUALITY: an amount of independence and the ability to contribute. I also want my memory of my loved ones to be of them living QUALITY lives. I will not keep someone alive just so I don't "lose" them. They're gone when they aren't themselves any more. People can "die," but remain alive. I think of it as people with brain tumors, TBIs, hormone level changes, etc. We take our physical bodies to mean too much. Any time our world is reframed in a new light to us, we are born again.

The questions that were being posed by the interviewers and the doctors in this piece could have been answered more fully and more correctly by a nurse rather than a doctor. Absent from the discussion in this piece was Hospice care, a relatively novel paradigm for managing the very conundrums posed in this piece. Doctors occasionally demonstrate competence regarding end-of-life care, but nurses are leading the way. I'm a Registered Nurse and Certified Hospice and Palliative Nurse, and I had to cringe listening to this piece while driving around to visit my home-care hospice patients, because the people being interviewed clearly had no idea what they were talking about - just as lost as many of our patients are before they receive hospice nursing care. Next time, ask a nurse, not a doctor! Feb. 02 2013

It also reminds me of a Hungarian poet, Sandor Petofi, One thought
"One thought keeps bothering me: Dying between pillows...inside my bed.....
O let me be a tree, blasted by lightning,......
Let it be lost in din and clash of steel,
In cannons' roar and trumpets loud appeal..."
Is it preferred to die in the prison of your body, in a fight of glory, or in your sleep....surprise me
Jan. 27 2013 11:37 AM

So where I agree about the sentiments of the other physicians about end of life care and life prolonging care in the face of a chronic disease and no quality of life.
The better way to frame the question is, if you're suffering some chronic disease, and your health begins to fail, would you want a DNR (do not resuscitate) order? The idea is would you want heroic measures taken if it will not prolong life, and/or will not lead to an improved quality of life down the road. Most people would probably say no... (family members might say yes for sentimental reasons). But if there's a good prognosis for you once they take heroic measures, such as removing a 9 year old appendix, you'd be insane to deny treatment. If you're likely to recover, and have a high quality of life, the answer seems to be a pretty obvious YES. The best example is babies. Babies are given CPR, survive, and go on to live long productive lives. To withhold CPR to babies in the NICU on the basis of low the efficacy of CPR statistics would be sheer insanity, not to mention criminally negligent. Clearly, this question, (and this dialogue), is being framed wrong. Jan. 23 2013 09:03 AM

If you're lucky, like we are, choosing to DNR, and understanding the point when someone you know goes from living and understanding and sharing to someone who won't be capable of a meaningful life, is one of the great and last acts of love you have to express for someone. It's also incredibly heartrending.  [missed date]

He became unconscious. I remember when our doctor said, "He is going to die, probably by the end of the week. The question is do you want to try to make arrangements to get him home?" I was so relieved that the doctor had used the "D" word. My husband had signed an advanced health care directive. I had the fluids and oxygen removed and the pain medication dosages were increased. Our kids got to say good bye, and I was there with other family members when he let go of his last breath. From my experience, I have changed my advance health care directive - I want nothing but pain medication. I want to repeat my husband's death. It was not quick, I hope it was painless but he gave us all the gift of having the opportunity to say good bye. It was an honor to be with him and something that I will be forever thankful for. Jan. 19 2013 08:43 PM

Although it is true that there is prolonged suffering death on one end and the typical "good" hospice death on the other, the true "bridge" between those extremes that was never mentioned either in the podcast or in the comments is Hospital-based Palliative Care. These are specialty consult service teams who are experts in pain and symptom management. More importantly they are experts in communication. Communication skills are the true MD/clinician challenge in trying to effectively help patients and families navigate the paradox that Robert mentioned. I am a social worker on such a team and witness people everyday avoiding tragic outcomes. Jan. 18 2013 12:30 AM

Not surprising in the least. Quality, not quantity. I feel that there is a drastic difference when using these procedures in an acute condition with reasonable resolution and quality of life potential versus using them in a patient with severe, terminal and painful illness. I've grieved for my terminally ill patients going through these procedures, prolonging life at the expense of comfort both emotional and physical, often times more so than I have grieved at their final passing. I have wept over to the fear of possibly being that patient myself. I feel strongly that my medical education and experience gives me a clear perspective in decisions that I make to forgo these procedures myself, as most the doctors surveyed for this piece. As a doctor I have sworn an oath to do no harm, and in my mind, allowing a peaceful death and shortening suffering in the conditions outlined above fall well within that jurisdiction.
I am veterinarian. Jan. 17 2013 06:47 PM

When we make the conscious decision to face death on OUR terms, we are able to access a tremendous amount of personal power. [missed date]

Great piece...if you've lived through the prolonged death of a loved one, you can see why doctors, who see death regularly, would feel the way they do. North America needs to come to terms with 'dying a good death' and allowing 'right to die' legislation to be debated and passed. Jan. 17 2013 12:51 PM

So few of the public really know what is in store for someone who has the misfortune to not have advance directives. They may have the ultimate misfortune to have family members who may believe that the interventions are potentially helpful rather than what they are really - a death prolongation as one slowly rots at the end of tubes. Graphic but that's how my colleagues and I described it.

Gail, hospice was not mentioned, because we were really talking about GETTING to hospice, which requires a patient to forgo aggressive therapy. We made the comparison between doctors and the general public, because that is what rolls in the door. AT THAT POINT, education is a difficult proposition. [Author]

Thank you for doing this story! I am a nurse in an ICU and deal with this problem constantly. Nurses too will tell you they don't want to die in a hospital with tubes connected everywhere. But it is a hard thing to explain to some families who believe that being a good child means doing everything possible to keep their parent alive. And no matter how delicately we try to explain quality of life vs quantity of life they just don't get it. Hopefully your program will get families talking about it and planning. I for one have told my family my wishes not to pointlessly prolong my life, and I'm only 29 years old. Jan. 17 2013 02:07 AM

I am so glad I am able to work for people and families who understand what a truly "Good Death" is and that it is in fact attainable. People really do want and deserve to die at home where they are comfortable and surrounded by love. Also once all of the stressful medical decision making is over relatives can focus on each other and making the most of the time left. Jan. 16 2013 11:22 PM

My great fear is losing my mental faculties and being kept alive by medical intervention when I have no appreciable quality of life, no recollection of my family and friends, do not understand what is happening to me and am deemed incapable of making a decision. Jan. 16 2013 05:36 AM

I'm a hospital based nurse and am NOT surprised with the answers by doctors on the graph. I bet you will get similar answers from nurses, too. More of the non-medical public should be aware what it really means when they say "Do everything you can." It rarely means the patient will have increased quality or quantity of life. Any quantity obtained often comes with reduced quality. The body usually knows when it has reached the end. More the non-medical public needs to know this. Jan. 15 2013 08:06 PM

My comments concern terminally ill patients and those who have no hope of returning to an acceptable quality of life. In my case it's as plain as the nose on your face – or as obvious as the prognosis (proboscis? hah!) If the person has made it clear that a gentle (and one would hope, speedy) death is preferred over one where life is prolonged for no reason other than to hang on, with no quality, then why choose it?

So, what do I fear most? An artificially prolonged, lingering death without dignity, surrounded by too many witnesses. Don't talk to me about not going gentle into that good night. I said:
 It's not a case of Dylan Thomas's "Do not go gentle...." That's bravado from the young Dylan Thomas who faced an early death but lived only half a life. He simply wasn't ready for death and was full of rage. Hitch wasn't.

 Hitchens came to understand that this was not the way. There's a time to be gentle, and he was aware of it at the end.
I'm with Christopher Hitchens. For someone with my illness or one similar, Dylan Thomas's poem makes no sense. Let it be as swift and as painless as possible. Why would I choose otherwise? If there's any erring in the amount of pain relief, let it be on the generous side. As generous as you like.

Here endeth this epistle.

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  1. Thank you for this epic four-episode compilation of thoughts on dying, Denis. How did you manage to make the huge effort this objectivity and clarity must have taken? You are a remarkable human being and a born communicator.

    The overall views expressed - and selected comments - put into perspective thoughts which - as I move through my late 70s - increasingly concern me. These are not death but the manner of dying; our right to choose based on prognosis; quality of life, and degree of suffering.

    Once again, thank you. Our thoughts are with you. Love to you both.


    1. You know what they say about what tends to concentrate the mind, Bob! Thank you. As I've said before, we'll really only know when we truly discover there's nowhere else to go.

  2. I appreciated this work as well.

    My mother was assisted with morphine in the last hours of her life to die peacefully. She had brain tumours and emphysema and had requested no resuscitation or treatment at the end. The ultimate cause of her death was a pneumonia which the doctors agreed not to treat at her request. It helped that my sister was a nurse with authority at the hospital where our mother actually died and she was able to support Mum's last wishes.

    I don't know any nurses who would not support such wishes to die peacefully.


    1. I'm glad your mother's wishes were respected. If a clear Advance Care Directive with legal status is not provided then medical staff may feel themselves bound to do all they can to resuscitate. People should always keep that in mind. I'm not advocating a DNR in all circumstances – far from it – but for those who are very unlikely to gain any benefit from it – in fact, who will be tortured if it is carried out.


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