How does "end of life care" become criminal? Part 1

I had never thought of any part "end of life care" or the dying process as criminal. When I received a call from a defense attorney representing a son being criminally accused of neglecting his mother and causing her death; I was shocked. I had hospice and palliative care experience. I supported the hospice philosophy and death at home with supportive care. How can a patient who was receiving medical care from an internist and home health care be neglected to the point of death? As the story unfolds, you will see the cracks in our health care system and a family's trust of their health care providers.

It is important to define some terms and present some background medical information. The patient was in the end stages of Parkinson's Disease, Lewy Body type which manifests with dementia. She was receiving services from a medicare certified home health care agency and not a hospice or palliative care program. Mrs. C progressed very much like a patient in the the end stages of Alzhemier's Disease and became bed bound, incontinent of urine and stool, and less responsive. Nutrition became a problem when appetite weakend and swallowing related to the Parkinson's Disease was compromised.

''End of Life Care" is a generic term that refers to hospice or palliative care (http://www.nhpco.org/) and is characterized by interdisciplinary health care team services. Palliative care is defined "making comfortable by treating a person's symptoms from an illness" (http://www.caringinfo.org/). This care may be present in any type of illness, usually serious and at any point in time during the illness. Hospice provides the same services, but usually get involved at the time when an ilness has been determined to be terminal and with a life expectancy of months rather than years. Hospice is a program that is also defined by reimbursement and is part of medicare, medicaid, and insurance programs. Prior to the development of these programs, health care professionals provided and continue to provide palliative care outside of an organized program. Some patients choose not to seek organized services or "fall through the cracks" of our health care system and are not aware that these programs are appropriate for them. Organized programs philosophically provide the highest level of palliative care as a result of the interdisciplinary team approach and improved communication between involved health care professionals. While individual health care professionals can provide a high level of this care, there is frequently breakdown in communication between physicians and nurses which result in errors or poor outcomes for the patient.

The Institute for Health Care Improvement (http://www.ihi.org/ ) has identified as an issue and is working toward improving end-of-life care. An audiobroadcast addressing the concerns at the site is described as:

"Between the care that patients and families want when faced with advanced illness, and what is often made available, “lies not just a gap but a chasm.” Yet, patients and families often find themselves at odds with or abandoned by their medical providers at this stage of their care, forced to seek others who will respect their wishes."
http://www.ihi.org/IHI/Topics/LastPhaseofLife/

As you read this and continuing blogs on this topic, you will see a "chasm" as just described that this family faced when trying to honor the wishes of the patient. Stay tuned