by Jacqueline O'Doherty

There has been so much rumbling in the news about "death panels" under "ObamaCare." Lost in the rhetoric is what really happens. As a patient advocate I have been front and center to many of these end-of-life discussions and have witnessed the first hand the hell both the patient and the families go through.

So before you get caught up in the hyperbole and drama of "death panels," let's look at what really happens at the bedside and who is really affected.

When a family is in crisis caused by the trauma of illness, healthcare decisions need to be made. These decisions are made based on the values of the patient and the patient's family. There is no panel making the decisions.

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However, some physicians and caregivers certainly can and do influence the decision making process based on their own values. This has become abundantly clear to me as I have watched different doctors, on the same case, give different and conflicting information to the family. Some doctors out there still have a paternalist attitude. This is not acceptable. One of the most egregious cases I witnessed was a case where a doctor told the wife her husband would be home, sitting at her kitchen table in less than a month.

This scenario was never going to happen, yet the doctor felt completely valid in telling the wife this, because he thought he was helping her feel better. As the patient advocate, it fell to me to gather all the doctors involved in the case to a meeting, in order to explain to the wife what the real prognosis was, the treatment options available and consequences of those options.

In some cases the family members disagree and are not all on the same page as far as treatment is concerned. One or more may want very aggressive treatment; others do not want their loved one to undergo any more suffering. The question becomes: Is the treatment worth the outcome? Does the quality of life match the patient's wishes? Most importantly what are the patient wishes?

This is why the ability to speak with your doctor about your end of life choices and options is essential. In my practice, I have witnessed spouses and family members struggling to make life and death decisions for their loved ones. Without the benefit of prior discussions, the spouse or children who are left to make the decision are caught in a torrent of guilt, doubt and stress, while trying to decide what is right for their loved one.

End of life care can only be decided by the patient and the patient's family. Discussions with the primary care provider before a crisis situation certainly gives the patient and the family better guidance then being thrown into the situation and making reactionary decisions under duress. The more thought out and planned the decision is, the more likely the patient's and family's values will be followed.

The bottom line is the patient and their family have a right to make their decisions based on their personal values...regardless of whether they chose aggressive treatment or no treatment.

And the only way to reach an informed decision is through discussion, education and information, not hyped up hyperbole.

We believe in autonomy in our country. Fundamentally we as patients have a right to choose what kind of end of life treatments we want and we make those decisions based on our own personal values. As with everything else in healthcare, if a patient is not educated about all their options, including the option not to treat or to cease treatment, there cannot be informed consent. Patient advocates protect the rights of patients. And the right to informed consent is a basic right every patient should have.

Jacqueline O'Doherty is a certified patient advocate based in Peapack, N.J., with Health Care Connect, LLC.