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The October Health Affairs Narrative Matters Essay



October 15th, 2012
by Chris Fleming

A patient in his nineties and in decline chooses the only legal way in most of the United States to hasten his death: He stops eating and drinking. His doctor wonders whether that is just or compassionate.

This is the situation David Muller writes about in his Narrative Matters essay in the October issue of Health Affairs. You can read the essay yourself, or you can listen to the author read it. Doctor Muller is the dean for medical education at the Mount Sinai School of Medicine in New York City, where he works in Mount Sinai’s Visiting Doctors Program.

Visit the free Narrative Matters essay archive. Narrative Matters is published with support from the W.K. Kellogg Foundation.

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3 Responses to “The October Health Affairs Narrative Matters Essay”

  1. kimlcole Says:

    This was a great article and I appreciate passionate doctors like Dr. Muller. He honored the wishes of his patient’s end of life choices but how do you handle pediatric cases? I am a nurse of 7 years with a back ground in pediatrics. On 2 separate occasions I have had to care for children that were DNR’s and the parents did not want to take the children home to die peacefully at home. Like Charlie, one child’s parents decided to stop all tube feedings and IV fluids while the other child was kept well hydrated because he was going to be an organ donor. Of the 2 situations, the hardest one for me to understand was the child that the parents allowed to starve. I felt this was such a cruel way for a child to end his life who had no choice in the decision. True, he was developmentally delayed, extremely medically fragile and was unable to make any decisions of his own. I just couldn’t understand how the doctors came to the decision to stop all feeds and fluids until this child passed. I just couldn’t see the “right” in this situation. I definitely agree that all states should addressing laws that deal with of End of Life Care and Palliative Care but these laws must also consider the choices that parents are forced to make when dealing with a terminally ill child.

  2. Rod Says:

    Dr. Muller,

    I enjoyed your comments and observations in the article “Physician assisted death is illegal in most states, so my patient made another choice”. I am the dircetor of a Hospice program and hear from patients all the time that no “end of life” discussion has taken place until the day they were referred to hospice. Our patients have the right to these discussions and they should take place at the beginning of their health changing journey and not at the end.
    Our hospice program has teamed with our healthcare organization to provide education to our 14,000 employees on Life Planning, also hoping to reach their family members. We believe that is education will be a benefit to our patients and families, allowing staff members to have an informed discussion when the subject of Life Planning and Advance Directives is brought up. We also hope that it will open the door for the these discussions to take place the the physician.
    I also agree with Ms. Lind’s comment that “we need to encourage all states to establish and create policies addressing Laws on End of Life Care, Palliative care and Hospice care for all patients through better communications between patient and physician”. Communication is always the key. We, as healthcare provides, need to know the patient’s wishes and how they want to live their life. That is what it is all about, living our lives the way we want and to it’s fullest potential. We, as the comsumer, should have the courage to talk with our physician about our plan and have them be a part of it, steering and educating on what to expect as an illness progresses.

  3. Susana Lindo Says:

    Dr. Muller
    I was very impressed with your article “Physician assisted death is illegal in most states, so my patient made another choice”. The information you provided and mostly the way how you treated the patient was commendable. The patient had discussed his options with his spouse and was adamant about what he wanted when the time came and he had prepared a do-not-resuscitate order. Dr. Muller as you got to know the patient you realized that he was inquiring about physician assisted death even though the state of New York did not have any laws governing assisted death. , you did provide the patient with options that did not involve medications. We need to provide patients the options that will help them to die with dignity such as those provided by the Oregon’s Death with Dignity Act of 1994. This law makes it possible for patients to discuss options available to them when they have concerns about life threatening conditions, debilitating or chronic illness.
    Patients and families are often afraid or unsure of what to ask their healthcare providers about end of life issues, how they can make death more bearable. Healthcare providers need to make information available to their patients about end of life options, palliative care options or any information that will assist the patient and families in making informed decision in the disease progression. The Palliative Information Act was created to give patient choices and empower them to make the right decision when faced with a life threatening illness. This law is of concern to all healthcare providers because it opens the door for healthy discussion about options with terminally-ill patients. Providers need to understand that this is not about ending a patient life, but rather about helping them to have a more physical and painless death when the time comes (Law on End of Life Care Rankles Doctors June 2011).
    As a healthcare provider it is difficult at times to sit and have a discussion with family members about what is happening to their loved one and what options are available to them. The options we need to present to patients and families are palliative care, hospice care and what each one has to offer that is, in line with patients’ wishes. We should not only consider the patient’s wishes for treatment options, but also patient values, hopes and beliefs (Ethics and Law-stoppain.org). As a healthcare provider, we need to make a better effort of promoting and informing our patients about end of life issues, palliative care, and hospice options. Patients are like families when you get to know them and it is very difficult to see them suffer. Despite legislations and feelings, we need to do a better job of providing accurate information to patients and families about their prognosis and treatment options (Law on End of Life Care Rankles Doctor June 2011).
    We need to encourage all states to establish and create policies addressing Laws on End of Life Care, Palliative care and Hospice care for all patients through better communications between patient and physician.

    References
    Jane Brody Law on End of Life Care Rankles Doctors June 2011 retrieved from http://www.nytimes.com/2011/06/07/health/07brody.html
    Ethics and Law retrieved from Pain Medicine and Palliative Care-StopPain.org http://www.stoppain.org/palliative_care/_Library

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