Our Death-Defying, Death-Denying Society - page 7

by TheCommuter 16,384 Views | 74 Comments Senior Moderator

The following is a psychic reading that will eventually prove accurate with every single person in existence today: we're all going to die. The fact is that life will end, and how Americans choose to cope with this reality gives... Read More


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    I work with a great deal of palliative care and hospice patients and deal with this dilemma frequently with the families of the patients. It is terribly hard and emotionally difficult to be the nurse that puts an NG tube down a terminally ill/dying patient because the family wants tube feeds....or to watch patients lay in the limbo area between being awake/alert enough to be considered "stabe but terminal" and then slip down into being on a ventilator because the family wants all measures done. Yes, I understand the frustration you are talking about. But also, I think that I understand that because I am a nurse...I see things from another side than these families. To us, it may seem so simple...you are thinking "your mother is dying. She may not die today. Yes we can keep her alive with tube feedings, then treat the pneumonia when she aspirates, and she may live for a little longer. But is that a quality life she is living?" But I always have to remind myself that these families are making decisions about the life of their loved one. Even if there is an advanced directive, the POA has the ultimate decision making at some point... and this means that there are people making decisions on whether to hold on to a sliver of hope or to let their mothers or fathers go. People may feel guilty if they didn't "do enough to save them", when we may know already that the patient wasn't going to be saved anyways, at least not for long. I try not to think about the failing economy at times like these, because my priority is to my patients and what is best for them. If all else fails, I imagine myself having to make this same type of decision for my own father if the situation arose. I cannot even fathom the turmoil, even though my experience tells me what is rational, the heart will play tricks on you.

    But to agree with one important point you made, I think EVERYONE should have an advanced directive. I encourage all my patients to have one and offer assistance in setting one up if they are interested. They are usually hesitant because they don't know what it is. So my selling point is telling them that I have one set up and I am only 27 years old. I think explaining what it does is essential in getting more people to have one completed.
    aknottedyarn likes this.
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    People should have advance directives, and this is a topic that needs to be discussed frequently with loved ones, just as frequently as you discuss changes to health or life insurance.

    I have however, noted that there is a trend for us as health care providers to try to "educate" a family member into changing their mind if the health care provider deems that whatever is being done or not done for the patient is not what they think should be done. I've seen them get very frustrated after they spend hours with family, "educating" and the family does not change their mind.

    While I am personally have discussed this many times with my family and I and they know my wishes, I do think after a family has had multiple conversations with health care providers, including the physician, that if they make a decision that seems out of kilter, we still need to respect it, and work with the family to be sure that the patient gets the best care, and best quality of life possible. We don't know every experience of that family, and they may never be willing to share it. We may never know the real reasons they are making the choices they do...We may think we know better, but...do we really know better?
    TJ'sMOM, laborer, and Susie2310 like this.
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    Quote from Asystole RN
    Why are taxpayers funding anyone's healthcare?
    Um...because we live in a civilized society, where we choose not to allow the most vulnerable - poor children, the elderly, the intellectually challenged and the mentally ill for example - to drop dead because they can't always earn a living on their own?
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    Quote from aknottedyarn
    I do agree with this except: Most people have no idea what is futile. They have to listen to HCP who are not comfortable saying what needs to be said and doing what needs to be done. If a doctor is able to say to the family that further treatment will do no good and in fact will decrease the quality of life the family can make an informed decision. If the doctor says it is a crap shoot, the treatment might help, might harm and may do nothing that is a totally different set of information for the family. We are taught to never give up hope for remission, a late cure, etc. Doctors even more so. it takes a very special doctor to say we will do no more. We will allow a natural death. How can families be asked to make a decision to pay for useless care when it is a rare one who can actually say it is useless, or futile? I have worked with families who decided to do everything possible. In some cases it allows the family time to gather strength to accept what has been explained. In other cases the family hates it but does not feel comfortable being the bad guy who says to "pull the plug". No family member should ever have to make that decision. It is a medical decision. Somehow we put that responsibility on the family in many cases. None are in good shape to make an informed decision.

    I have been in the position of having to discuss this for my DH. I was fortunate. The doctors made the decision and told me they would "pull the plug, as it were, the following day. If I did not want that he would be moved to another place and he would still die but would not have the support of the ICU staff for him or me. I could easily see those doctors saying that if I chose to have him moved out to another area and maintained until all the organ failure overcame the machines that I would be responsible for the cost. I understood what was happening, most don't. I still do not think any decision I would have made at that time would be considered informed so the lawyers would get rich, the family get poor, and the person still die.

    I believe doctors need to get the education necessary to be able to say that a natural death is our goal. Until that time comes it is unfair to consider making the family pay for extended care.
    aknottedyarn, I'm not quite sure I understood your sentence where you said "I still do not think any decision I would have made at that time would be considered informed so the lawyers would get rich, the family get poor, and the person still die." Every day, all over the world, people make the best end of life decisions they can for their family members, under enormously painful and stressful circumstances. Once family members are given sufficient information to make a decision to halt or prolong treatment, and taking into account advance directives, I believe the decision lies with them not the doctor. What one person may consider a futile treatment for their family member is not what another person would consider futile, especially if they have reason to believe it is what their family member would want. You mentioned you believe doctors need to be able to say that a natural death is our goal: I believe that you have every right to speak for yourself and your own family members, but not for others, who may have different beliefs. I believe in discussing all options with the family, and then listening to what they say they want, and respecting that.
    Last edit by Susie2310 on Aug 23, '12
    sauconyrunner likes this.
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    My comments were in reference to the comment of payment for futile care. The biggest problem I have found is that most physicians have difficulty with the discussions. I do agree that for some, perhaps many, natural death is not the goal. What I was trying to say, and obviously not saying it clearly, was that once a point of futility is reached it is the responsibility to the physician to convey that to the family. Should they want to continue efforts to keep the body alive, in spite of the futility, I can see an argument for self pay. What I find difficult is that when faced with an unexpected death, and my teaching of grief tells me all are unexpected, family cannot make an informed decision. That would leave the doctor, hospital, and the lawyers fighting about whether the decision was informed.

    I can only speak for my case. In this case I would not have been capable of making an informed decision. I needed the physicians to tell me that no further inverventions would help. As a nurse I understood this. Many family members do not. I will always treasure those doctors who were direct and also kind in their wording and communication. I did not make the decision to "pull the plug". I was able to follow the instructions of the doctors to do what my DH wanted.

    In the case I cited previously when my friend was fought with about her insistance to follow her mother's written wishes: The doctor's inablity to follow the Living Will has caused enormous issues in her life. She is left with terrible thoughts as a result of their behaviors. The fact was that her mother was not going to survive the episode. Her mother was lucid and refused dialysis. The daughter followed what she had been told and what was in writing. The doctors agreed it would not save her life. IMHO it was because it was a teaching hospital and the residents wanted more opportunities. This is not a good reason to try to shame a fmaily member into defyinmg the Living Will and her mother's lucid instructions.
    TheCommuter likes this.
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    Quote from Asystole RN
    Why are taxpayers funding anyone's healthcare?
    There's the billion dollar question!
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    Quote from aknottedyarn
    My comments were in reference to the comment of payment for futile care. The biggest problem I have found is that most physicians have difficulty with the discussions. I do agree that for some, perhaps many, natural death is not the goal. What I was trying to say, and obviously not saying it clearly, was that once a point of futility is reached it is the responsibility to the physician to convey that to the family. Should they want to continue efforts to keep the body alive, in spite of the futility, I can see an argument for self pay. What I find difficult is that when faced with an unexpected death, and my teaching of grief tells me all are unexpected, family cannot make an informed decision. That would leave the doctor, hospital, and the lawyers fighting about whether the decision was informed.

    I can only speak for my case. In this case I would not have been capable of making an informed decision. I needed the physicians to tell me that no further inverventions would help. As a nurse I understood this. Many family members do not. I will always treasure those doctors who were direct and also kind in their wording and communication. I did not make the decision to "pull the plug". I was able to follow the instructions of the doctors to do what my DH wanted.

    In the case I cited previously when my friend was fought with about her insistance to follow her mother's written wishes: The doctor's inablity to follow the Living Will has caused enormous issues in her life. She is left with terrible thoughts as a result of their behaviors. The fact was that her mother was not going to survive the episode. Her mother was lucid and refused dialysis. The daughter followed what she had been told and what was in writing. The doctors agreed it would not save her life. IMHO it was because it was a teaching hospital and the residents wanted more opportunities. This is not a good reason to try to shame a fmaily member into defyinmg the Living Will and her mother's lucid instructions.
    aknottedyarn, I do believe doctors should tell family members when no further interventions would help. Without the knowledge that no further interventions will help, how can a family member make a decision to halt or prolong treatment? If you are talking about such situations as a patient being declared brain dead, and the family being faced with the decision of whether to discontinue whatever life support measures are currently in place, then once the doctor has told the family no further interventions would help, I believe the family has the right to make the best decision they can. I am uncomfortable with your concern about the family members being able to make an "informed decision"; this to me seems to suggest that you are saying they are not competent to make such a decision, and that the decision should be taken away from them. Under these circumstances they make the best decision they can, albeit under a highly stressful, painful situation. I respect your feeling unable to make an informed decision, and that you valued the support you were given by the doctors. I do believe that these decisions have to be made by the family, with as I said previously, sufficient information from the doctor so that they can make the decisions.
    Last edit by Susie2310 on Aug 23, '12
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    For those of you who don't want a natural death, what do you want?
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    Quote from Ruby Vee
    Perhaps if the family were paying for the care, the decisions made would b different. .
    This to me, is exactly what's wrong with healthcare today. None of us actually pay for the cost of our health care. Sure, we pay our insurance premiums, or get benefits from the government, but we're not actually writing that check to cover that ICU stay. If we actually had to pay for services, like we do anywhere else, things would be very different.

    I completely agree with the fact that the dying process is personal and decisions about end of life care should be left to patients and families and their wishes honored. At the same time, however, we have to be honest that health care resources are finite. Unfortunately, this isn't a discussion the US is ready to have.

    As a society, we have unrealistic expectations about what medicine can do--it seems that people believe if they can get to a hospital, their loved one will live and be back to normal. That just isn't the case. Our culture has such a fear of aging and death that is pathological. It's going to take a major paradigm shift before any honest discussion can take place.
    CapeCodDreamer, Altra, aknottedyarn, and 1 other like this.
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    AsystoleRn- "
    Why are taxpayers funding anyone's healthcare?"


    Because no one should be too poor to live. I don't know about you but if my child became ill and the only treatment cost $500,000.... I would not have the money. We all need insurance and unfortunately there are some that can not get insurance due to pre-existing conditions. They have the right to care just like you or me.
    tewdles and Cold Stethoscope like this.


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