Why National Health Care Decision Day Matters

The U.S. was debating the merits of the Affordable Care and Patient Protection Act in 2009 when, in the heat of debate, then Governor Sarah Palin proclaimed that the Democrat health care expansion plan would create “death panels.”

ACA Section 1233 on “Advance Care Planning Consultation” would, she claimed, require senior citizens to justify continued health care. This, in turn, would create committees which would make life and death decisions.

“The America I know and love is not one in which my parents or my baby with Down Syndrome will have to stand in front of Obama’s ‘death panel’ so his bureaucrats can decide, based on a subjective judgment of their ‘level of productivity in society,’ whether they are worthy of health care,” Palin asserted.

Her accusations were shameless political grandstanding and fear mongering. Section 1233, which wasn’t included in the ACA, would have simply allowed for providers to bill once every five years for a Medicare recipient to have an advance care planning consultations with their physician.

The goal was to encourage more doctors to talk to their patients about what they would want and would not want in the event that they became critically or terminally ill. The purpose was to have people consider important end-of-life decisions, such as:

• Who do you want to make your health care decisions if you are not able to do so?
• Do you want to be put on a ventilator?
• If so, under what circumstances and for how long?
• If you develop a cognitive degenerative disease or a terminal illness, do you want to be resuscitated?

This is far from determining someone’s productivity level for society.

The provision asked individuals to document what they want and do not want when they still have decision-making capacity and, ultimately, to negate the need for any kind of panel or committee to figure out what they might have wanted. In other words, the provision was emphasizing the importance of having an advanced health care directive.

In the real world of health care, life and death decisions are made every day, and they have been since the days of Hippocrates and Galen.

Do we treat this patient with this drug or that one? Is surgery an option? Despite our best efforts, is this patient at the end of life? We can no longer control this patient’s symptoms, what do we do now? And, above all, who gets to make these decisions?

When a patient comes into the hospital with a life-threatening condition that has left them unconscious or lacking decision-making capacity, someone has to make decisions.

Sometimes that is family. Sometimes it is a lifelong friend. Sometimes it is the medical staff because there is no one else. Ultimately, someone has to make the final decision, which is profoundly difficult without an advanced directive.

Health care facilities are charged with trying to figure out who should make decisions, and it is not as easy as one would think. Just because a patient is married with three kids does not ensure they have a competent surrogate decision maker. If the spouse has Alzheimer’s and the children all cannot get along, someone still must be appointed to make decisions.

Unfortunately, the hospital staff may not choose the person the patient would have wanted, unless they have already documented who should make their decisions.

In an acute care setting, things can get very complicated very quickly. If a patient decompensates, decisions about intensive care, mechanical ventilation and cardio-pulmonary resuscitation will have to be resolved. If a patient’s condition rapidly changes, decisions will have to be made within minutes, making any family meeting and consultation next to impossible.

The medical providers I know always want to save someone’s life and restore them to full health – or, when this isn’t possible, to help the patient adopt a new lifestyle post injury. In like manner, I do not know any providers who just want to do procedures for the sake of procedures. They want to achieve realistic therapeutic goals, making people’s lives better.

Unfortunately, in spite of all the medical technology we possess, medical professionals cannot always produce a therapeutic outcome, and, in some cases, procedures would only extend the dying process.

I regularly worry about procedures being carried out on patients at the end of life that are not helping them, and I wonder, when an advanced directive doesn’t exist, whether the procedure is something they would have wanted.

At the end of the day, someone authorized to make a decision has to tell doctors and nurses what the patient would want or would not want. Sadly, as a clinical ethicist, a week does not go by without meeting a family who is struggling with the questions of “who decides?” and “what are we going to do?”

That is the point of an advanced care planning consultation. It is about deciding, with your health care provider, what you want to do and who you want to make your health care decisions.

Therefore, every year, April 16th is set aside as National Health Care Decision Day to emphasize the need for each of us to declare, as best we can, what we do and do not want regarding our end-of-life care.

At a minimum, our loved ones should know who we want to make our decisions in the event that we can no longer communicate. Almost every state allows patients to complete a “Durable Power of Attorney for Health Care” or an “Appointment of a Health Care Agent” document.

Next, we all need to share our convictions about end-of-life issues with our family, close friends and our primary care physician. Preferably, this needs to happen every year during your annual physical and, periodically, with your loved ones.

It is difficult, and it can be uncomfortable but, honestly, it is way easier (and far less painful) for you to tell your loved ones your desires and wishes now than for someone like me to ask them what you would want us to do when faced with an end-of-life decision.