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End of life care is too complicated

Gene Uzawa Dorio, MD
Physician
June 5, 2013
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Advancing technology has allowed life to be simple. Nowadays, when you go shopping, you slide a credit card and voila, sold. Why does it seem though some things are getting more complicated?

Dioctyl sodium sulfosuccinate is another name for Colace. We are forced to have two names for one drug: a brand name, and a generic. The pharmaceutical companies tell us they have patents mandating we live in their complicated world, and I tell them my patients get confused and face life-threatening errors from their multi-nomenclature lingualese.

There are certain nonnegotiable facts of life we expect, most markedly: death and taxes. Not surprisingly, federal tax codes comprise 20 volumes and over 73,000 pages, and this doesn’t include those for your state. Death used to be easy, but we have successfully made this final act more complicated.

Having a will seemed simple in the past. Now we have power of attorney, advanced health care directive, do not resuscitate, living trust, five wishes, POLST, probate, and a myriad number of other terms forcing some of us to even reconsider death. There are two subjects I want to discuss which even medical professionals have difficulty defining: palliative care and hospice care.

Please, Google their definitions and although you’ll find hospice seems straight forward, when to initiate palliative care is ill-defined. Presently, my right big toe, a chronic curable problem, could be under a palliative care multidisciplinary team of experts resulting in advice to stop running.

The experience of doing housecalls and working on the frontline in geriatrics, while observing and medically managing end-of-life patients, has allowed me to watch the process of going from active and vibrant, to bedridden and demented. Everyone deteriorates physically or mentally, yet each of us follow our own road at different rates.

Generally speaking, when you are 75-years-old and admitted to a hospital with a medical problem, there might be 20 options of studies and treatments that get you better. When you are 85-years-old, you might have 10 options, and at 95-years-old, you might be down to 5 options. Reality is, there is a point in life where you have only one or two options to get you better, and there is a possibility you might have none.

Palliative care should begin when we are faced with minimal options. There might be pain and discomfort, but usually these symptoms can be relieved to maintain quality of life. Testing (including labs, scans, x-rays, etc.) and even hospital admissions are still possible, but this decision comes from frank discussions among physician, patient, and family balancing risks and benefits. There are no death panels or rationed care. Should there be a new medical breakthrough with potential cure, an option to pursue it would be given.

When physical or mental pain, discomfort, and suffering become unrelenting and quality of life is significantly diminished, hospice is offered assuring intensified end-of-life care.

The present ill-defined terms of palliative and hospice care have allowed certain profiteering healthcare organizations to sever their obligations by convincing patients and families to put their loved ones on hospice care. The organization saves money by not doing an appropriate workup for the disease, and financially washes their hands of the patient.

Further blurring this issue are the words comfort care offered by hospitals as a euphemism for hospice sowing terminology intentionally confusing the public. Wouldn’t you want a high degree of comfort care at any time for your loved one?

The medical profession must be vigilant of potential exploitation to keep our elder seniors out of harm’s way. Creating well-defined standards and criteria for palliative and hospice care may help make complicated end-of-life decisions simpler. As a merciful society, we are obligated to move forward in our efforts, so when it is my turn and I’m down to no options of life, I want my final question to be: “Where do I slide my card?”

Gene Uzawa Dorio is an internal medicine physician.

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