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End-of-Life Wishes Often Ignored by Doctors

A recent study conducted by the Institute of Medicine found in its “Dying in America” report showed a huge discrepancy between peoples wishes on how to die and how they actually die. Though people want to die a pain free death in the privacy of their own homes, most people do not have a legal document to state their wishes and even those who do often face a medical system not designed to give them what they want.
Dr. David Walker and Dr. Phillip Pizzo, both co-chaired the committee that issued this disturbing report. They found that the current medical system which is a fee-for-service model that is financially lucrative in treating terminal patients with the most aggressive treatment. The end result is feeding and breathing tubes, use of powerful drugs that often make the patients final days unpleasant. The report also cites that “the fee for-service-model, the lack of coordination between medical and social services, the challenges that individuals face in finding a provider who’s willing and knowledgeable to speak with them about death and dying all conspire against them in coming up with the right individual plan.” Ironically as healthcare costs spiral, the very type of death experience that Americans say they want would actually shrink medical bills and cut the governmental burden.
As to the report’s findings about the difficulty finding a doctor willing to talk openly about an end-of-life treatment plan, that often is the result of a serious lack of training in the U.S. medical schools where death is treated as the enemy and not as a natural occurrence. The lack of training in emotional, spiritual and palliative care was documented in my book Soul Service: A Hospice Guide to the Emotional and SpiritualCare for the Dying (Balboa Press, 2013)
The importance of having a living will as well as a medical power of attorney in place cannot be stressed enough not matter what your current health situation. Federal law in 1991 allows for medical advanced directives. These offer the patient and the family an opportunity to have a say so in their own care. The living will works by appointing a legal health care representative and gives instructions for future life-sustaining treatment plans if one is unable to make those decisions for oneself.
A do not resuscitate order (DNR), is accepted by doctors and hospitals in all U.S. states. It serves as a request to not have cardiopulmonary resuscitation (CPR) if the heart stops beating or breathing ceases.
A medical power of attorney, also called a health care power of attorney gives someone you trust legal authority to act on your behalf regarding health care decisions in case of mental disability or any health issue that might affect your ability to think on your own.   If you currently do not have a legal representative to assist you with advanced medical directives, you can go to the websites of online providers for legal assistance, such as  or to download forms for all states.
 One newer development has been the Physician Orders for Life-Sustaining Treatment (POLST)Paradigm form. This form has become part of the care offered at hospitals and health facilities. This is a voluntary form, not required by law.  The POLST Paradigm form was developed to help honor preferences at the end of life, regarding having or not having treatments continued. The POLST form is a medical form and is not completed by the patient, but rather a health professional. The POLST programs are not available in every state. The form must be signed by the patient’s doctor, in some states a physician assistant (PA) or a nurse practitioner (NP) may sign off on it, some states require the patient and the chosen decision maker to also sign. The original form stays with the patient. It is advised to keep this form in a location that can be readily available to emergency personnel, such as the refrigerator door.
The POLST Paradigm form is considered appropriate for terminally ill patients with life threating conditions. The form remains with the patient even if they are moved between various medical facilities. The POLST form will be kept in your chart if you are staying in a nursing home.
A POLST Paradigm form will only be recognized in states where there is this program. It is always recommended to talk directly with your primary care physician about the form and how to best communicate your wishes.
 Terry Schiavo, the Florida woman who was the high profile center of attention in a long court battle of removing her feeding tube would lend itself as a cautionary tale. It always best to have family conversations about how you want to end your life while you are still mentally alert and able to express your wishes. Taking sometime now can avert a disastrous situation later.

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